Thursday, January 31, 2008
Parents battle over life of brain-damaged daughter
Lauren Richardson, 23, has been in a persistent vegetative state since taking an overdose of heroin in August 2006
By SEAN O'SULLIVAN, The News Journal
Posted Thursday, January 31, 2008
In a case with parallels to the 2005 uproar over Terri Schiavo, a Newark father is fighting a court order that could allow the removal of a feeding tube and end the life of his brain-damaged daughter.
"She's committed no crime and doesn't deserve to have this death imposed on her," said Randy Richardson, 52, on Wednesday.
According to court records, Lauren Marie Richardson, 23, is in a persistent vegetative state following a heroin overdose in August 2006. She was pregnant at the time and was kept alive at Christiana Hospital -- with feeding tubes and a breathing machine -- to allow her to give birth, which she successfully did in February 2007 to a healthy baby girl.
Late last week, a court awarded guardianship of Lauren Richardson to her mother, Edith Towers, who maintains her daughter did not wish to live this way and seeks to end artificial life support measures.
Randy Richardson has appealed a ruling by Delaware Court of Chancery Master Sam Glasscock III, putting any action on hold until the court's chancellor or a vice chancellor reviews the ruling, a process that will take at least three months.
Once that ruling is made, one side or the other may be able to appeal to the Delaware Supreme Court.
While the case is similar to the one involving Schiavo, legal experts said that matter did not set any precedents Delaware has to follow.
"That was a case about Florida law," said Drewry Fennell, executive director of the American Civil Liberties Union of Delaware.
In the Schiavo case, her husband, Michael Schiavo, waged a seven-year legal battle to end life support for her, stating that she did not want to live by artificial means. Schiavo's parents opposed removing a feeding tube. A lower court and later the Florida Supreme Court sided with Michael Schiavo. The U.S. Supreme Court ultimately declined to intervene and in March 2005, the tube was removed. Terri Schiavo, 41, died 13 days later.
Lauren Richardson, a Glasgow High School graduate, did not leave a "living will" stating her desires in such a situation, or use a mechanism in the Delaware law called an Advanced Health Care Directive, a simple form a person can fill out to make their end-of-life wishes clear.
Randy Richardson acknowledges that the daughter he knew before her brain injury is gone. But, he said, she is still alive and responds to him. He said she has made progress since her overdose -- she no longer needs a ventilator to breathe -- and given more time and therapy that can continue. "We just want to give her a chance," he said, adding he is not talking about extreme measures.
He also said she should be kept alive for the sake of her 1-year-old daughter, and is concerned Towers, his ex-wife, has not allowed Lauren and her child to see each other.
On Wednesday, Richardson and the Delaware Pro-Life Coalition Inc. released a video of Lauren taken recently at The Arbors, a nursing home near New Castle, where she is receiving treatment. In the video, Lauren appears to respond and react to family members and a dog.
"There is no life support except ... a feeding tube," Richardson said, adding he has been told that with the proper therapy, his daughter could be taught to eat.
He said he would like to take her home and allow her to live out whatever is left of her life with dignity and not have it end in slow starvation with the removal of a feeding tube.
'A very private situation'
Lauren's mother declined comment through her attorney William A. Gonser Jr. beyond a brief statement on Wednesday: "This is a very painful, very sad and very private situation and both sides have suffered greatly."
In court, Towers argued that her daughter told her and others, at the time the Schiavo case was in the news, that she would not want to live that way.
According to court records, Towers recalled her daughter saying, "Don't ever leave me hooked up to life support. I would not want that. I think it is horrible. I think that I do not ever want to be kept on life support if the doctors say there's no hope."
Towers testified that she then promised her daughter she would not and made her do the same if she ever ended up in that situation.
An uncle also testified, according to the ruling, that in a separate conversation Lauren told him such an existence would be "gross" and she wouldn't want to live like that with others caring for her.
Richardson, who divorced from Towers when their daughter was young, disputes the accounts, saying Lauren was living with him at the time and expressed no such wish.
The court ruling indicates Lauren moved around among relatives.
Richardson said his former wife never mentioned his daughter's statements about life support and the Schiavo case before she filed for guardianship.
He also said his daughter made clear other end-of-life matters -- like her wish to be an organ donor -- but did not write a "living will" or state her opposition to life-support measures in her journals. Richardson also said his daughter had expressed anti-abortion sentiments, as in the case of her then-unborn daughter when she was encouraged to get an abortion.
Towers has temporary custody of Lauren's child, but Richardson said a second guardianship case is pending on that issue.
A difficult decision
In his Jan. 24 decision, Glasscock wrote that he believes both parents were fit to be Lauren's guardian and both love her and wish for what is best for her. However, he found that testimony presented by Lauren's mother was "clear and convincing" about her wishes and the evidence "presented by Lauren's father does not change this conclusion."
As for Lauren herself, Glasscock wrote, "All the medical evidence supplied by the physicians -- by the independent neurologist and by Lauren's own doctors -- is in agreement: Lauren is not in a coma but is in a persistent vegetative state. A large portion of her brain was destroyed by a lack of oxygen following a heroin overdose of August 2006. She is unable to communicate or experience consciousness. Her continued existence is dependent upon tube feeding and hydration. ... No improvement in her condition can be expected."
Richardson said he disagrees and, in addition to filing an appeal, reached out to several groups for assistance, including the Delaware Pro-Life Coalition, which organized a prayer vigil Wednesday outside The Arbors. About 25 people turned out, some carrying pictures of Lauren.
Richardson said the vigil was not protesting The Arbors, where he believes his daughter is being treated well.
Fennell, of the Delaware ACLU, said it is a sad situation for all involved but the system appears to be working the way it was intended.
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, agreed. Delaware is a state that does not require living wills or other written documents to allow for someone to be removed from life support, he said. It is among the states that allow verbal testimony from friends and family about what the patient would have wanted.
"There will be a scramble with each parent locking horns, trying to find friends and relatives who she said things to about this issue," he said.
Caplan said the ruling giving guardianship to the mother makes it tougher for the father to make his case.
"The burden will be on the father to prove the mother is not emotionally or psychologically qualified to act in the best interest of the daughter, and reflect her true values," he said.
Outside The Arbors on Wednesday, Richardson said he waited 17 months before saying anything publicly. "We didn't want to do this. It is not in my nature to speak to newspeople. ... But if I don't, who will? I love my daughter."
Wednesday, January 30, 2008
On Friday, January 18th, 2008, after just 24 hours or so of frenzied planning (research, literature development, layout reconnaissance, trumpet calls to local troops, and alerting the media), the efforts of eight members of MI ADAPT culminated in a great and successful action in Grand Rapids, MI, at Calvin College's the January Series lecture, entitled, "Love, Justice & Humility: A Bioethicist Meets the PillowAngel."
Lansing ADAPT and Grand Rapids ADAPT joined forces (with encouragement from around the state) at the alma mater of Dr. Douglas Diekema, chair of the ethics review board at Seattle Children’s Hospital that approved what has become known as the “Ashley Treatment,” which stunted the growth of a child with mental and intellectual disabilities named Ashley in 2004. In addition to the growth attenuation "therapy" from high doses of estrogen that fused her growth plates, thus stunting her growth, it was also decided for Ashley that she would receive a hysterectomy and have her breast buds removed, at 6 years of age. These three procedures are often collectively referred to as the "Ashley Treatment" (a title that Diekema finds inappropriate and insensitive).
Although our group was small, we had barely a day's notice of the event (two of our members were up until the wee hours of the morning copying flyers and settling final details), and the temperature was not even 20 degrees, we came on strong. At a strategy meeting that morning, we decided that, because of our small numbers, our lack of time to do more in-depth planning, and given the fact that we were at a small, conservative college, our best approach would be to educate the public about the Disability Community's perspective on the case. To do this, we would distribute flyers and ensure that we had a presence at both the lecture and the follow-up discussion.
As our caravan was unloading (contemplating changing our goal to getting this thing rescheduled to a warmer day), sharp-eyed but reasonably cordial Campus Security guards spotted our signs and made it clear that we would not be able to hang or tape signs anywhere or take them into the lecture hall with us, nor could we pass out literature indoors or in the walkway leading to the entrance of the building. This was a slight snag in that holding signs and passing out flyers in the frigid and windy weather would be rough, but in true ADAPT form we were not deterred!
In general, we were well received. In fact, two professors of Disability Studies (one with a significant physical disability), and a few other people, expressed how grateful they were for our presence and thanked us for "fighting the fight."
With members at every entrance and two people in the main lecture hall (we had only planned on one going inside for the whole lecture, but the wheelchair-using professor of the Disability Studies class--which is currently studying ADAPT, by the way!--became star struck when he found that he was actually talking to "the Weasel" and insisted that Weasel go in as his special guest), we distributed almost 600 flyers and had several good conversations with the public AND the media! (Apparently, a short blurb was on a regional Grand Rapids television station--Wood TV 8.)
As the crowd arriving died down, we all decided to watch the presentation in the overfill room. Dr. Diekema spoke on the medical facts of Ashley's case and how the ethics committee came to its decision. We were surprised at how technically he spoke of Ashley and how he said nothing of the social implications of these procedures. At the conclusion, members of the audience had a short opportunity to ask questions of Dr. Diekema. We were fortunate that one of the two questions asked came from one of our members, Joe Stramondo, who challenged him to explain why Ashley's parents and the committee opted for such extreme, irreversible medical procedures rather than use personal care services, durable medical equipment (i.e. a hoyer lift) and other such supports. Dr. Diekema appeared a bit flustered at the suggestion that this decision was driven by social stigma and eventually had to admit that these other options were rejected merely because the parents did not want to use them.
Following the lecture was a guided discussion sponsored by CALL (Calvin Academy for Lifelong Learning) that was facilitated by Dr. Ronald Hofman, a pediatrician and friend of Diekema. The participants of this discussion included members of the medical community, Dr. Diekema's brother (who had a slight, visible physical disability), citizens who clearly fell on both sides of the issue, and two mothers of multiple children with significant disabilities, whom the facilitator had planted from among his own patients. Our members packed the back of the room.
It was obvious by both the setup of the room and the initial direction of the "conversation" that they were not expecting us or our perspective. Hofman was clearly of the opinion that the team of bioethicists who signed off on all three of the elective procedures requested by Ashley's parents (growth attenuation, uterus-removing hysterectomy, and breast bud removal), had NOT overstepped any moral line in the sand in terms of the autonomy, value, bodily integrity, and equality of the patient in her original, natural state.
The comments of ADAPT and a couple of other people in the audience made clear that this line drawn by Ashley's inherent rights as an individual human being (regardless of her doctors' certainty that she would always remain the mentally functional equivalent of a 3-6 month old child), was the heart of the matter and the reason to hold such a conversation, rather than the emotion diffusing "how did it make you feel" questions and the "that's a very reasonable reaction" responses. We did not allow the topic to be coddled or the audience to be lulled to sleep. We were the voice of reason that encouraged others to express their doubt. We know this to be true because we were told so afterward by those very people.
To the facilitator's credit, he rode the wave we created quite well, calling on the "folks in the back of the room" as readily as anyone else in the audience, though this was surely to retain decorum and control, certain that we would make our points whether called on or not. About that he was right, and with good reason because our points were good. ADAPT's perspective on the issue is right, true and clear: Ashley X is a real person and denying her the right to be all that she can be (even in the name of providing love and care) is wrong! These operations were elective, in no case alleviating any certain discomfort of Ashley's. Numerous alternatives existed and were rejected for non-medical reasons. Ashley would live with the decisions that were made for her parents' convenience long after she no longer lived with those parents. (That point, made by Ian Engle, got his words, picture, and angle into the Grand Rapids Press the next day!)
Parental convenience (choice) OVER personal autonomy (choice) is the same as money over freedom (i.e. institutional care over choice, Kevorkian's "understanding" of the woes of his patients over the treatment and support they deserve, or Nazi Germany's "solution" over the lives of so many millions of innocent people). The fact that Ashley cannot express her choice does not constitute forfeiture of her right to have one.
Please, do not mourn, ORGANIZE!!! -- Theresa Squires, Melinda Haus-Johnson, Laura Hall, Teresa Christmas, Shana Holet, Joe Stramondo, Ian Engle, and Clark (the Weasel) Goodrich Lansing ADAPT/Grand Rapids ADAPT
ADAPT's voice needs amplification. Be proud, get Loud! Lead On!!!
Saturday, January 26, 2008
Sandra Greenwoood, 60, has pleaded not guilty to the charge of "neglect of a resident resulting in death and involuntary manslaughter" stemming from the death of her disabled son, Jared Greenwood, the Farmington Daily Times and KDBC-4 reports. Jared Greenwood, 26, who was autistic and mentally impaired, was found dead on the bathroom floor of the Bloomfied (New Mexico) home that he shared with his mother and sister, Journey Greenwood, on September 30, 2007. His body was covered in feces, dirt and garbage. It's been determined that he died from a blood infection that he developed from several deep, open sores that were the result of his body remaining in one position for a long time. A dose of antibiotics could have saved his life, the Daily Times reports. The state had stopped paying for Jared Greenwood’s care in March 2007 because disability paperwork had not been refiled. Sandra Greenwood still received state funding to take care of Journey, who has Downs syndrome.
How not to ask, why did this happen? Where was the help? The follow-up when the disability paperwork was not refiled? What kinds of support, if any, was this family receiving? friends? family? community? neighbours? Raising children with disabilities is not a solitary endeavour.
Wednesday, January 23, 2008
Former doctor prepares for prison term after being found guilty of 2006 murder
Friday, January 18, 2008
BY KEVIN SAMPIERof the Journal Star
PEKIN - There was a noticeable difference in Karen McCarron's choice of clothing Thursday, leading some to speculate she was preparing for jail.
And now, after a nine-day jury trail, she is on her way to prison. McCarron was found guilty Thursday of suffocating her 3-year-old autistic daughter Katherine "Katie" McCarron with a garbage bag.
McCarron, 39, of Morton sat silently in Tazewell County Circuit Court as she was found guilty of two counts of first-degree murder, one count of obstructing justice and one count of concealment of a homicidal death.
Absent were the professional business-like clothes she wore throughout her trial, instead replaced with light-colored jeans.
She carried a black backpack with her and wore white canvas shoes with no laces, and for the first time, glasses instead of contact lenses. There were smiles and hugs among husband, Paul McCarron's family, who softly cheered as the guilty verdict was read.
"If the measure of a person's life could be quantified by the number of people that loved them, then Katie, in her brief 3 1/2 years, achieved well beyond all of us," Paul McCarron said in a prepared statement about his daughter after the trial.
Karen McCarron told police and jurors about driving to her mother's empty Morton home on May 13, 2006, and wrapping a plastic garbage bag around Katie's head until she died.
She then drove the girl's lifeless body back home and put her in bed as if she were asleep.
Paul McCarron, who is in the process of divorcing his wife, cried as the verdict was read, but Karen McCarron showed no emotion.
She has been free from jail on $1 million bond since June 9, 2006, but Judge Stephen Kouri revoked that bond after the verdict.
Handcuffs clicked around McCarron's wrists and she was led out of the courthouse by Tazewell County sheriff's deputies.
Karen McCarron's attorneys, Marc Wolfe and Steve Baker, entered a not guilty by reason of insanity defense on her behalf, which was rejected by jurors as well as the option of guilty but mentally ill.
Jurors deliberated about four hours Wednesday and five hours Thursday before making their decision.
Wolfe said he was "extremely disappointed" with the guilty verdict and said, "I'm certain she's disappointed as well," referring to his client.
Karen McCarron was mentally ill at the time of the killing, Wolfe said, and he thought the evidence showed that.
"The testimony bore out the connection between her illness and the crime," he said, but stopped just short of confirming he will appeal the verdict."Certainly that option will be explored," he said.
Kevin Johnson, chief assistant Tazewell County state's attorney, said he told Paul McCarron and family the trial would be a long and difficult process.
"Today we reached the end of that journey with a justified verdict," Johnson said.
Paul McCarron stood next to prosecutors after the trial and thanked them and police for their work.
"We are blessed to have these caring and professional people in our community," he wrote.
The sentencing range for first-degree murder is between 20 and 60 years, but because Katie was younger than 12 years old, that sentencing range increases to between 60 and 100 years.
A sentencing date was not set Thursday but is expected to be scheduled today.
Numerous witnesses said Karen McCarron, a former pathologist, couldn't accept Katie's autism and was obsessed with finding a cure.
When a cure couldn't be found and suggestions of institutionalizing the girl and giving her up for adoption were rejected by family members, she chose to kill her.
Katie was sent to a special school for children with autism in North Carolina, where she lived with her father for nearly two years. Karen McCarron pursued various types of therapies and hired caregivers to work with her daughter as the obsession with curing the autism grew.
"I ask all parents, and especially those of children with disabilities, to always love your children and be proud of them," Paul McCarron wrote in his statement. "Cherish every moment you have with them. Love, patience and tender efforts are the best therapies."
Kevin Sampier can be reached at 346-5300 or firstname.lastname@example.org.
Tuesday, January 22, 2008
The following petition is being circulated by the friends of Gerry Mitchell, artist and wheelchair user, who was injured when he was struck by a police car. Please read the story. If you would like to support Gerry's friends in their call for an investigation into the alleged mishandling of the incident by the police department, then consider signing the petition and forwarding it to others.
Here is the link:
Monday, January 21, 2008
Today is the birthday of the Reverend Dr. Martin Luther King, Jr. He would have been 79.
Recently I was in Memphis at an activist gathering, and as part of the weekend's activities, we toured the National Civil Rights Museum as a group. If you don't know it, check out the website at http://www.civilrightsmuseum.org/. This is a very nice museum, renovated from the old Lorraine Motel building, though with some awfully steep ramps for chair users. Anyway, it's set up in a way that has you end right by the balcony of the Lorraine where Dr. King was shot and died on April 4, 1968. The little patch of bloodstained concrete on the balcony has long since been repaired by a square concrete patch, and the visitor has to stay inside behind a glass wall in the exhibit room between the old motel rooms 306 and 308. You can lean on the railing and look out across the street to wherever it was whoever killed him (James Earl Ray's guilt being disputed) was waiting.
Our group had an evening tour, so while I dutifully leaned on the railing and looked out, there was a beautiful moonrise to ponder, but on each side of me were the motel rooms made up to look as they had in 1968. And those really got me to thinking about the day to day life of organizing, about the travel (whether local or national), the constant pushing, the milling of information, the never ending to-do list, the people you meet, the people who don't like you, the people who help you, the committees, the letters, the phone calls, the media, the deadlines, the discussions, the conflicts and tensions, all of it. Some people love it, some hate it, but as far as I can tell, people do it because it must be done. In this, I see Dr. King as an individual I can relate to (although I'm sure his workload was exponentially larger).
Dr. King is obviously different than me in several ways. He was black; I am white. He was a man; I am a woman. He had no apparent disability that I know of; I am deaf. He was a minister; I do not have a religion. People wanted to kill him; I don't think anyone wants to kill me. And yet I appreciate some of the labor that went into his work, and I hope to go on appreciating and learning.
We in the disability rights movement, and also in the Deaf community, have no real current individuals who serve in the role that Dr. King did for the civil rights movement. The nation recognizes no one who we instantly know speaks for people with disabilities. We have good, even amazing leaders, outstanding organizers, brilliant policymakers, but I don't think we have a cult of personality per se or a spokesperson (I don't want a spokesperson, do you?). And yet speaking personally, I think that learning about individual people who organized and resisted serves to make us stronger, to see what is possible in the individual.
Growing up, I read like a fiend (whether this was due to my hearing loss, I'm not sure). I remember learning Dr. King's story when I was about seven. When I was eight, my dad brought me home a bunch of old educational stories my school was dumping off...but they were kid versions of the lives of people like Susan B. Anthony, Marcus Garvey, Reies Lopez Tijerina, Geronimo. I read about Gandhi. When I was fourteen, one of my Christmas presents was The Autobiography of Malcolm X (I asked for it). All of these people struck me as doing something new, something different, something to try to resolve matters of justice. I continue to seek out the stories of diverse people (especially women with disabilities) who have sought to make change, such as Wilma Mankiller (has a disability), Annie Dodge Wauneka (had several disabled children), and (obviously) Frida Kahlo (had multiple disabilities).
In fact, I got my start in the disability rights movement through the stories of individuals. In college, I worked on the Disability Rights Movement archive collection at the University of California, Berkeley. I got to sort the papers of folks like Ed Roberts, Patrisha Wright, and Hale Zukas. I learned about Dr. Frank Bowe and Deaf President Now. Later I learned more about ADAPT leaders: Wade Blank, Bob Kafka, Stephanie Thomas, Mike Ervin in Chicago. In looking at these people's work, I began to see how they connected with others and how that, ultimately (in my opinion), is the secret of how they have helped shepherd change.
I think Chicago, too, where I live, is a place full of people folks should pay a lot more attention to...in order to see the largeness of their people's struggle. We're not just Haymarket and Emma Goldman's final resting place. We're moving on, building on what came before us. The world should know about folks like Elvira Arellano and Rudy Lozano, but most importantly for me, there are a lot of people here in the disability and Deaf communities whose lives are so wildly interesting you can't help but get sucked into the community's issues. I don't really want to embarrass anyone by naming names because you're all too modest, but folks, your organizing labor is worthy of being honored on Freedom Day.
Last week, the Health Subcommittee of the U.S. House of Representatives Committee on Energy and Commerce held a hearing on the Community Choice Act, a bill that should be of significant concern to feminists with and without disabilities. Several members of FRIDA are grassroots advocates for community choice, either through ADAPT or through their day jobs. For those who don't know what "community choice" means, it is essentially the ability of those with disabilities on Medicaid to choose where to receive services that support their daily lives, such as bathing and toilet care or a home aide who helps cook and clean. At this time, the vast majority of those on Medicaid who need such services are being forced into the nursing home and state institution industrial complex.
Stephanie Thomas of Austin, Texas, and one of ADAPT's national organizers, made the following comment in the course of her testimony to the Health Subcommittee in favor of home- and community-based supports:
"For the women on this committee, and the women who staff this committee and its members -- take heed. The vast majority of people in nursing homes are women over the age of 65, the vast majority of the underpaid direct careworkers are women, and the vast majority of women who are providing longterm care to family and friends for "free" are women. Is this issue swept so completely under the rug because of this? Who can say? What we can say is that most of you, men and women alike, will have to face this issue in the near future from one of these angles - a recipient of personal care services, a family provider, or through paid service provision.
"I faced it when my father-in-law came to live with my husband and me. A diabetic who had a stroke, he stubbed his toe and soon had to have first that leg amputated and then the other. His eyesight was going and so was his memory of things like whether he left the stove on. It would have been so simple for him to go to a nursing home; "professionals" of various ilks urged us to do it again and again! Despite the fact that my husband and I both have disabilities, we were able to keep him out of a nursing home, and living with us - with the help of attendant services. Today however, he would be on the bottom of an over 40,000-person waiting list and it is doubtful he would have reached the top before he passed away. I will face this again as my quadriplegic husband comes to need even a little more assistance, as my parents get older and -- hopefully last but not least, as I too age and need more assistance."
In the fight to keep people out of nursing homes and in the community, we are lucky to have well-spoken women advocates like Stephanie and many others. I feel that in today's feminist discourse, the spotlight tends to shine on reproductive justice and domestic violence. As deserving of attention as these issues are, I strongly feel that caregiving and personal assistance is also of critical, immediate concern to millions across the United States.
The people (largely women) who provide home and community based supports currently deserve to be well paid, recognized and respected for the work that they do. It is hard, sometimes back breaking, very personal work. I once worked as a personal care/workplace assistant for eight hours a day, and while my employer did her best to ensure that I felt valued and respected, the fact is that it can be a pretty tough job. You have good days and bad days. You have to be THERE, always. I was lucky enough to be paid for it. Millions are not. There are very talented caregivers out there who really go the extra mile to empower their clients, and we are just sticking their heads in the toilet. It is not fair. Recognition and a structure for home and community based supports at the national level is critical.
Saturday, January 19, 2008
Recently the blogger Moggy alerted us to a Dear Prudence column (see http://www.slate.com/id/2181579/) that includes a letter from an apparently nondisabled woman who is in a longstanding affair with a man who is married to an apparently severely disabled woman. While I personally find little meat to FRIDA-style advocate on this particular column other than writing the paper or the editor, I keep finding myself thinking about the implications of the situation and Prudence's response. The letter and response are as follows:
I am a middle-aged woman who for almost two decades has been having an affair with a married man. His wife is severely disabled and has no interest in sex. He tells me that if I would marry him, he'd divorce her and put her in a nursing home, but I cannot see why that should happen. Their grown children help with her at-home care. I feel deeply loved by this man and want no one else. So, what's the problem? People thinking that I have no man in my life, always making comments about it, and trying to fix me up, etc. My man says that I am free to tell them about our relationship. But when I have opened up and explained my situation, I have to hear what a bitch I am (not close friends, of course). I'm a highly independent woman who pays her own bills and makes her own decisions. I'm tired of pretending that I'm a woman without love, for in truth, I'm loved quite deeply. But I also don't feel that I should have to explain. What's a woman like me to say?
Who are these people who always make comments and try to fix you up? You've said that those who are close to you know your situation. If these are co-workers or casual acquaintances, you have to shut down the inquiries and fix-up suggestions. Saying with a small, enigmatic smile, "I have a very fulfilling life and I'm not looking to change it," should help. I understand that you resent being seen as a middle-aged woman without a partner, but if you're as independent as you say, this misperception shouldn't bother you as much as it does. And surely, not everyone reacts with such hostility to this complicated, difficult state of affairs. If you would prefer that people in your work or social circle understand your love life, perhaps, when the question comes up again, you can explain things to someone with both a sympathetic ear and a big mouth, who will then clarify for everyone else why you're not looking for companionship.
*sigh* I personally am not a big fan of trying to seek advice on personal life issues from a newspaper morals broker, and I'm not going to go in depth on the basic affair issue.
What I am mainly concerned about for the purposes of THIS post, on THIS blog, is the issue of the disabled wife being seen as easily divorced and dumped in a nursing home. In my view, Not Lonely is right to be skeptical about the nursing home bullshit, although somewhat narrow-minded in thinking it's ok for just the grown children to support their mom. Community supports, hello? This Prudence columnist should have called her out on this. Damn, we have to educate the advice columnists.
I also have a lot of questions about the wife not being interested in sex. This is third-hand news. The wife very well could be not interested in sex. Or, perhaps the husband is not interested in sex with her? Is it the disability? Or, are the husband and wife not clued into the many fulfilling ways sexuality can be expressed? What's up? If it's been 20 years since the relationship with the other woman started...???
I would really like to see more disability-positive discussion of dealing with marriage and disability and sexuality and extramarital relationships. AND I would like to see more discussion of the relationship issues LGBTQ people with disabilities face. I am not sure that FRIDA can advocate on moral discussions concerning relationships (for example, is the whole affair thing right or wrong?), but my feeling is we can and should advocate that there should be an arena for disability-positive discussion of these issues.
Some might ask why I would say FRIDA would hold off on "moral" discussions of relationships, when we have so obviously advocated on our position on topics like hysterectomy and euthanasia. Here is the bottom line: part of FRIDA's stated mission is "to spearhead social momentum towards real choice, respect and self-respect of women with disabilities." I think FRIDA is about disability rights, not morals.
When it is not clear that any person with a disability is able to make a choice in their lives, we have a problem with that. And if society views us as having limited choices, we have a problem with that too because it conditions people to take some of our choices away. A gray area is possible though...perhaps the stance that we are entitled to choice and decision-making is a moral position. Maybe believing that people with disabilities are PEOPLE, and that disability-positive education and dialogue for all is a human right, are moral positions too. But what I think we are about is basic rights---and one of our basic rights is to choose our values or morals.
Am I wandering around in my own head? Maybe. That letter is some food for thought, though.
Friday, January 18, 2008
Today, Michigan youth disability rights activists fliered and participated in an event at Calvin College that featured Ashley X doctor Douglas Diekema as a featured speaker. Dr. Diekema spoke about the "Ashley Treatment" before an estimated crowd of 1000. The auditorium, estimated to hold 600, was full, and the remaining crowd was redirected into an overflow room.
FRIDA friends who represented reported that after speaking at length on the Ashley X case, Dr. Diekema only answered two questions. The first was from someone we don't know who wanted to know how many people were on the Seattle Children's institutional review board. The second question, from Joe Stramondo (who is clearly a power chair user), basically dealt with whether Ashley's parents seriously considered community supports.
Many parents and advocates attended this event. We are awaiting further write-ups from those who attended and will link as they become available. In the meantime, visit the following news story:
GO FRIDA FIGHTERS!
Thursday, January 17, 2008
From today's Daily Mail in the UK:
Doctors turned down mother's request to remove disabled daughter's womb 'because of charity backlash'
Last updated at 12:21pm on 17th January 2008
A mother who asked to have her disabled daughter's womb removed said a negative backlash from charities has caused doctors to refuse to operate.
In a landmark case Alison Thorpe, 45, asked for her 15-year-old daughter Katie to undergo drastic surgery to prevent her from the "pain, discomfort and indignity" of menstruation.
The debate sparked fierce criticism by groups such as Scope which said Katie should not be sterilised because it would be "very painful and traumatic" and was "not medically necessary".
Ms Thorpe, a mother-of-two from Billericay in Essex, has been told that doctors at the Mid Essex Hospital Services NHS Trust have refused to consider operating without a "clinical reason".
Ms Thorpe said: "They have said the would not consider putting the plan in place at the moment and when Katie starts her period they would be prepared to consider if there is any clinical reason for the procedure.
"Which means that if and when Katie does start her periods she could endure months and months of pain and discomfort before anything is done."
Katie Thorpe, 15, suffers from severe cerebral palsy and needs round the clock care. The terminal condition has left her unable to walk or talk, confined to a wheelchair and double incontinent.
Katie's plight echos the controversial case of nine-year-old Ashley X in America who underwent breast bud removal and hormone treatment to keep her in a child like state, small and manageable for her parents who care for her.
Ms Thorpe, who lives with her 12-year-old daughter Melissa and 52-year-old partner Peter Reynolds, said: "The only opposition has been from disabled rights movements but I would say to them 'Come and spend a week with me, walk in my shoes'.
"I've spent 15 years with my daughter, as a mother who loves her dearly I am trying to do the best I can for her."
She added: "I'm hoping common sense will prevail and the Trust will not be swayed by the disability rights groups.
"I think the Trust has bowed down to what they perceived to be public opinion, that is my personal belief. I have had overwhelming support from the public, both able bodied and disabled people.
"I feel the trust misread the so-called lack of support from the minority, groups such as Scope.
"I have not had any contact with any (disability) organisation, they do not know me or Katie. They have not provided any support or help for us as a family.
"I am not surprised by what they said but in in the way they said it. They have not been made aware of any of the facts in his case, they made up their mind before hearing the other side of the story, without referring to us.
"I don't want to take away disable people's rights, I want to give them choice."
Doctors initially suggested contraceptive pills and injections to stop Katie's periods starting but Ms Thorpe ruled them out because of the risk of the wheelchair-bound daughter suffering from thrombosis.
Ms Thorpe has been liaising with consultant gynecologist Phil Robarts from St John's Hospital in Chelmsford and was originally hopeful they would operate on her daughter to remove her womb and her appendix because she feared Katie would not be able to tell anyone if she suffered an appendicitis.
She said: "It was an agonising decision to make, as with every decision, I questioned myself endlessly 'Am I doing the right thing?'.
"It is a decision I made probably about two years ago when she was 12 or 13-years-old. It's taken me about 13 years to consider it, to consider the pros and cons, the advantages and the disadvantages.
"It (the operation) would prevent her going through the mood swings, the discomfort and the indignity of it all.
"If Katie had stomach cramps she wouldn't be able to say 'Mum I've got really bad period pains' she would be in pain and we wouldn't know.
"There would obviously be short term discomfort, as with any operation, but we could manage that with painkillers. The short term discomfort would be more than outweighed by months or even years without pain."
Despite being "disappointed" by the decision she has written to the non-executive directors asking them to put a plan into place to operate as soon as Katie starts her periods.
She added: "It's one of those things, life with a disabled child is one long battle and this is just another step down the ladder."
"It was not unexpected. It means we move to stage two and carrying on fighting."
Saturday, January 05, 2008
Below is the full article (January 4) by David Mercer from The Times (Munster, Indiana) about the trial of Karen McCarron (and some background about her case), which is set to begin this coming Monday, January 7. It is alleged that McCarron suffocated her three-year-old daughter, Katherine, who was autistic, with a plastic bag on May 13, 2006, because she "wanted a life without autism." A key question for jurors will be whether Mcarron was legally responsible for her actions or mentally ill at the time of the killing.
Mother charged in autistic daughter’s death headed to trial
Just days after she and her father moved back to the family home in Morton, Ill., from North Carolina in May 2006, 3-year-old Katherine McCarron was dead.
Police and prosecutors say the little girl’s mother - a physician who apparently was unable to cope with her daughter’s severe autism - suffocated her with a white plastic bag then tried to make it look like an accident.
Opening statements in McCarron’s trial are expected to begin Monday in Tazewell County Circuit Court in Pekin, just southwest of Peoria, where jurors could face a tough question: Was McCarron legally responsible for her actions or was she insane?
McCarron, who is charged with two counts of first-degree murder and has been free on bond since 2006, has been found mentally fit to stand trial. But a medical expert hired by her attorneys said McCarron was insane at the time of the killing. McCarron, who faces up to 60 years in prison for each charge, has pleaded not guilty.
Much of the case could hinge on a videotaped confession that Karen McCarron gave on May 14, 2006, the day after her daughter’s death. Karen McCarron was being treated at OSF Saint Francis Medical Center in Peoria for her own attempted suicide.
On the hour-long tape, which a judge has said can be used in court when her trial begins next week, McCarron said she wanted “a life without autism."
“Autism left me hollow,” she said. “It seems that everything I tried to do didn’t help her. She was a tough nut to crack,” McCarron said.
Lawyers on both sides of the case either declined comment this week or did not return calls by The Associated Press seeking comment.
After her daughter was diagnosed with autism, Karen McCarron became well-known in a Peoria-area support group.
Dr. David Ayoub, a leading supporter of a controversial theory that mercury in early childhood vaccines causes the disease, said in 2006 interviews that he had occasionally talked with Karen McCarron after Katherine was diagnosed with autism.
“She was very dedicated to trying to get treatment for her daughter,” Ayoub told Copley News service in one of those interviews. “I’ve met with a lot of parents who are dealing with autistic children, and she was one of the most loving mothers.”
McCarron and her husband, Paul McCarron, decided in 2004 that Katherine needed better medical care and found a clinic in North Carolina that specialized in treating autism.
Paul McCarron, a Caterpillar Inc. engineer, transferred to a new job there and moved with the little girl. Karen McCarron, a pathologist who reportedly was unable to find a suitable job in North Carolina, stayed behind with the couple’s younger daughter, Emily.
The separation, however, proved difficult for the family, so Paul McCarron, planning to move back to Illinois in mid-2006, brought Katherine home in early May, according to news reports after Katherine’s death.
But on May 13, prosecutors say, Karen McCarron drove the little girl to her parents’ house, also in Morton, and suffocated her with a plastic bag. McCarron reportedly told police she’d taken Katherine for a drive to calm her after she couldn’t get the little girl to take a nap.
McCarron allegedly brought Katherine back home, carrying her past family members as if the girl was asleep, and laid her down in a bedroom. A while later, McCarron told family she couldn’t wake her daughter.
Emergency workers were called to the home to treat Katherine, who wasn’t breathing.
McCarron wasn’t a suspect, according to police, until they were called back to her house early the next day, after she tried to overdose on over-the-counter drugs.
Police said they found McCarron and her husband, who had returned from a business trip, hugging and crying. They say she’d just told him she killed Katherine.
Paul McCarron has since filed for divorce. Messages left for a Morton, Ill., phone listed for him were not returned.
Tazewell County State’s Attorney Stewart Umholtz called the death “tragic” in a 2006 interview with Copley News Service.
“It’s a terrible incident anytime a mother would be charged with murdering her child,” he said.
But the little girl’s her grandfather, Michael McCarron, said Karen McCarron didn’t lack for help in raising her daughter, whom he called happy and playful.
“This was not a question of there’s no place to turn, there’s no support,” Michael McCarron told the Chicago Tribune. “This was not a murder about autism.”
A service of the Associated Press(AP)
(h/t to Kristina Chew from Autism Vox, for keeping us up-to-date)
Tuesday, January 01, 2008
Happy New Year, FRIDA Fighters! Good work to all who spoke out in 2007 against sexism and ableism! (And all the other types of bias too.) Even if all you did was read this blog every now and then, you educated yourself, and for that I applaud you. The schooling you get outside of school is some of the toughest larnin' you'll ever get.
As we begin the Gregorian New Year, a topic that's been brought up lately among the younger feminists I know is: what "Wave" are we? Feminism, to step into the history books for a tiny second, is often considered to have three "waves." The First Wave was the suffragettes around the beginning of the last century. The Second Wave was the feminists of the 60s and 70s. And the Third Wave are the newer feminists who come from different races and different backgrounds and have a great spectrum of issue and identity concerns.
So, do feminists in the disability rights movement have some kind of parallel "Wave" categorization? Not officially. Not necessarily. In fact, I think trying to fit disabled women into "Wave" groupings is not really appropriate given the great range of disability rights activities and philosophies. Around 28.5 million women in the US are estimated to have a disability of some kind, but bear in mind that not every woman has a feminist consciousness, and not every disabled woman considers herself to have a disability. This number does not count the vast numbers of nondisabled women who live with or are related to a person with a disability.
I do strongly feel that younger women feminists today have the opportunity to learn from an older generation of disabled feminists. This may be the closest way in which we identify with the Third Wave. That, and the fact that younger disabled feminists are concerned with a huge range of issues. However I think that most women with disabilities are largely disenfranchised from most feminist or even women's group, and this is something we should work to fix.
What do you readers think? Where is the disability rights movement in feminism and what are our "Waves?" I have lots more thoughts on the issue but would prefer at this time to start a forum discussion....
Happy New Thinking!