What to Do About Javona Peters?

Javona Peters is a 16 year old girl who, due to a surgical complication, is now in a "persistent vegetative state." Her parents are duking it out about whether to "pull the plug." The following link explains the case as well as includes commentary from Wesley J. Smith.

http://www.northcountrygazette.org/news/2007/12/28/whats_the_rush/

Note that at the end, Smith refers to Haleigh Poutre, an eleven year old who awoke from a "persistent vegetative state" just as "pulling the plug" was about to occur. If you are unfamiliar with Haleigh Poutre, see http://michellemalkin.com/2006/01/19/haleigh-wants-to-live/. Poutre's story, aside from the coma issue, is an extremely grim reminder of the connection between domestic violence and disability.

Finally, I would also like to note for those who may be wondering: "persistent vegetative state" is a sloppy term that doesn't really explain whether someone is about to die, because no one really knows. Instead, I'd see it as a form of disability, for example under the ADA definition which defines disability as something that limits major life functions (obviously). The question that has people going is whether life in a "persistent vegetative state" is a life worth living, and who is the best judge of that. The person with this condition may be on a feeding or breathing tube, but again those alone are not an indicator of proximity to death or suffering. I'd also agree with Smith that the use of "vegetative" or "vegetable" is a cultural putdown used on lots of folks that does nothing but generate negative feelings.

The question for FRIDAwatchers is: Is Javona's story a feminist disability rights issue? Without a great deal of information being given out in the press as yet, we can see that this story involves a mom and a dad making a separate decision about their daughter's life. Their relationship complicates the matter, especially with media involved as one gets painted the good parent. I think the single motherhood angle is of concern as so many children with disabilities have single moms, who are under a lot of pressure. Obviously, Javona is a girl...and for some reason it seems like the girls in a coma get a lot of press. Why is that? We should really be examining why the media goes for the damsel in distress thing, in general. Why do editors seem to feel readers need these stories? It must sell...

Questions, questions...what should be done? And what should we do?

California Disabled Mom Fights to Keep Child (Again)

Fisher: A disabled San Jose mother fights again for right to raise child
By Patty FisherMercury News
Article Launched: 12/28/2007 01:33:54 AM PST

The first time Sabreena Westphal went to court to try to keep her children, she became a celebrity.

Suffering from cerebral palsy and unable to walk or fully use her arms, she was still determined to care for her two young sons. Disabled parents and advocates rallied behind the young woman with the pixie haircut and impish smile who, at the time nearly 20 years ago, went by the name Tiffany Callo. She was the subject of a book, "A Mother's Touch: The Tiffany Callo Story." She rode in a limousine to an appearance on "Donahue."

But the book didn't come with a happy ending. Her little boys were adopted and taken far from her San Jose home.

Five years ago, she became pregnant again. And now she's back in court.

This time, Westphal, 40, is trying to prevent her 5-year-old daughter from being adopted by a couple in San Joaquin County. This time, she has the Americans with Disabilities Act of 1990 on her side and a political landscape that has changed substantially for disabled Americans.

For the rest of the story see: http://www.mercurynews.com/ci_7827393?IADID=Search-www.mercurynews.com-www.mercurynews.com&nclick_check=1.

We've Been on Break, But the Struggle's Still On!

It's been that vacation kinda time of year again, FRIDAwatchers, but the struggle continues. Are you ready for a new year of resistance? I am!

Linda from Rochester NY has been watching the disability radar across the US and forwarded a couple of important stories to watch. Many thanks to Linda. See, keeping an eye on the news and doing some web surfing is how we know where people are struggling. I cannot stress how important that is. If we can locate the places of struggle, then we can think, as a community, of ways to try to right the wrongs being done.

In particular, we need to bring forward the cases where women with disabilities are facing struggle. It doesn't have to be brought forward on this site, but somewhere (although hopefully we'd hear about it!). It is SILENCE that is holding us back from living the lives we are capable of living, and you never know when someone else's issue will become your own personal issue. Doesn't mean you gotta be a loudmouth, but speak out in whatever way you know how.

I will post the links to Linda's stories in just a couple of minutes. See the rest of today's postings for the stories.

New Crip Women's Site and Other Biz

Hi folks, we don't announce every new addition to our list of blogs, but today we added For Disabled Women (http://www.4dwm.org/wordpress) under our feminist resources at the right of the page. This site is being created by some of our crip sisters and is brand new, so I wanted to direct some traffic over there. Go check them out!

In addition, I'd like to invite anyone who has been reading this blog to go ahead and comment or ask questions!! I heard a woman recently say that she reads this blog but was too shy to comment. This is a community forum and anyone is welcome to comment. Pretty much the only thing that I (as one of the moderators) try to block is blatant spam advertising. If you look through the site, we definitely have allowed comments that we don't agree with. It is important to know what people are thinking and to talk about issues. You can even request that FRIDA bloggers talk about issues you want to discuss. So, give it a shot. You don't have to be disabled to comment! Or even a good speller! We're not looking for any kind of certificate. ;)

We expect that posting will slow down on this site through the New Year, but who knows? Even as many of us celebrate various winter holidays at this time, I want to ask you to remember those of our disabled brothers and sisters for whom the holidays can be a very stressful and difficult time. Please take some time to make sure that the people in your life feel loved, relaxed and appreciated. Some of our people don't have families and some of our people don't have homes. Some of our people are in hospitals. So, not only at this time of year but all year round, help us all give meaning to the words "disability community" by doing whatever you can to make sure folks know they are not alone.

And finally as 2007 begins winding down to a close, thank you all for this tremendous year we've had! FRIDA is looking forward to several FRIDAlicious activities planned for 2008 and we hope YOU will join us, either in person or online.

DNR on Wheelchair for Second Grader with Cerebral Palsy

Schools ponder role as child nears death
Kids' Do Not Resuscitate orders prompt debate
By Jeff Long
Tribune staff reporter
December 9, 2007

As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.

In bold letters it warned, "Do Not Resuscitate."The DNR order goes everywhere with Katie, including her 2nd-grade classroom at Laremont School in Gages Lake. The school is part of the Special Education District of Lake County, where an emotional two-year discussion ended this summer when officials agreed to honor such directives.

Now, district officials find themselves in the unusual position of having planned the steps its staff will, or won't, take to permit a child to die on school grounds.

For the rest of the story, please click on http://www.chicagotribune.com/news/local/chi-dnrkids_bd_09dec09,0,3568955.story?coll=chi_tab01_layout.

I encourage you to post comments to this article at the Tribune site, as well as write to this author at jjlong@tribune.com and to the letters to the editor department using the form at http://www.chicagotribune.com/news/opinion/chi-lettertotheeditor,0,3578487.customform?coll=chi_news_opinion_util.

Perspective: Where Were We? Here We Are!

I was flipping back through past posts and re-noticed that in January of 2007, someone left a comment on the FRIDA blog wondering why a FRIDA-type response wasn't issued when Terri Schiavo was being killed down in Florida. A blogger named Susan left a good note explaining that, in fact, disability rights activists were involved in the struggle against Schiavo's murder, but the mainstream media chose to ignore us because we were seen as freaks.

One important item for folks to keep in mind is that Schiavo's death in March 2005, together with a rape and a forced sterilization case in the summer of 2005, fed the conviction of FRIDA's founders that we had to do something to stop what was happening to women with disabilities. Hence the formation of FRIDA in the fall of 2005. Most FRIDA members were involved in some way in the battle to keep Schiavo alive, but we were not yet organized as FRIDA. Instead, we worked through other groups, such as Not Dead Yet.

What if FRIDA had been around during the fight for Schiavo's life? Would that fight have looked any different? It's hard to say. There were a lot of cogs in that machine: the in-family battle, the court and legislative proceedings, the right-to-life groups, the anti-euthanasia disability rights groups, and so forth. EVERYBODY had a viewpoint on the Schiavo case. At least a year after she died, I still found Schiavo references most of the times I opened major magazines. Her name is synonymous with one of the greatest moral quandaries of our times: if I become suddenly severely, profoundly cognitively disabled and didn't have any kind of advance directive, should my blood and married kin be allowed to take my life away?

I was reading a blog post by Leslie Carbone (http://www.freerepublic.com/focus/f-news/1375765/posts) that basically says that feminism deserted Schiavo to her fate by setting up a system of cultural beliefs and practices that devalued Schiavo as a person. Read it and its comments for an onslaught of conservative perspective. As I read this, I had two thoughts. First, Carbone has an interest in making feminism look bad (it's all about the self above others! choice, choice, choice!). And second, Carbone doesn't connect feminism to disability rights at all. So what I think is that had FRIDA been able to participate in the Schiavo activism in any meaningful way, one thing we may have been able to help with is putting forward the disability angle in connection with feminism.

Speaking as a Deaf woman and disability activist trying to parse out the feminism and disability connection (not as someone trying to speak for FRIDA as a whole...other members may disagree with what I have to say), a fundamental concept I want people to start thinking about is this: no one disability makes someone less valuable simply because of the severity of the disability.

A person who is paraplegic is just as valuable as Terri Schiavo, who is just as valuable as a person who is blind, who is just as valuable as a person with Down syndrome, who is just as valuable as someone who has AIDS, who is just as valuable as someone who has pica, who is just as valuable as a little person, who is just as valuable as someone who has bipolar disorder, who is just as valuable as a person without a disability. Period.

And men and women and intersex and transgender people are all equally valuable as well.

And none of us are really better off dead. (Are you listening, Hollywood?)

I am not in any way going to disacknowledge the fact that disability can make one's life really complicated. Disability can be a real pain in the ass. It can be very painful and/or isolating. So can, depending on the situation, your gender or sexuality. There are ways to deal with this for the empowered individual (and I don't mean taking a ride into the woods in Kevorkian's van or having a friend suffocate you with a pillow). I just think the difficulty lies in our society and systems, rather than in the people themselves. Society doesn't tolerate difference very well, so then we end up hearing things like, "That poor girl is so disabled! She'd be better off dead or in an institution!" Frankly, when I hear that statement prefaced by, "I'm a radical feminist but...", I'm shocked. My response is, "No, you are not. Your pity is an oppressive attitude that I find offensive not only towards whoever you're talking about, but offensive to society as a whole."

How incredibly disempowering it is to hear that "better off dead" or "pity poor Polly" attitude from a sister! In my view, feminism builds community, so this makes me feel like the speaker wants to cut the disability community off at the knees. This is the way I feel when I read a lot of feminist-related criticism of the Schiavo case...because it hardly ever makes the connection to disability empowerment.

Connecting feminism with disability is in reality a powerful tool against the forces that would demote individualism and self-determination. Self-determination is itself an important idea in the self-advocacy movement, the basic idea being that people should be allowed to make their own decisions, whether or not others will judge those decisions as good or bad. We all have the right to make good and bad choices (obviously, there would be an interventionary line drawn at things like self-harm or harming others). I think that actually goes beyond the idea of just having choices...towards respecting the individual's right to growth.

So, going back to the question of Schiavo and FRIDA...could we have made a difference if we had been organized back then? Who knows? What we do know for sure is that because we saw what happened to Schiavo, our resolve has been strengthened. Now that we have FRIDA there is no excuse for any of us to sit back and say, "There's nothing we can do about being a woman with a disability, and there is no one who will listen." What we do need is for our community to continue to work together and keep bringing issues to our attention and for us all to make feminism and disability rights REAL to all people.

Open Wide Tours New Prentice Hospital

Wow! If you are a woman with a physical disability / condition then the new Prentice Hospital is made just for you. They have beds and examing tables that lower almost to the floor. They have lifting equipment to help move you from your chair to table / bed. Unfortunately, if you are a woman who is , blind or deaf or hard of hearing you will have a very hard time receiving services from Prentice.

Open Wide subcommitte as promised toured the New Prentice Women's Hospital we were greeted by 3 tour guides for 6 Frida members and 1 friend of a member. They provided an interpeter. We began right away with alot of questions pretaining to accessibility. They were not prepared for our questions. Alot of our questions were directed to the Patient Representitative who later came out to address our concerns. She had no answers to any of the questions pretaining to blind or deaf or hard of hearing accessibility. She even went as far as saying that no one answers the TTY calls, they never even heard of a VPS service. We kept pushing for an in house intepreter and a disability liason but their response was very common that its too expensive. It was very frustrating to hear once again that inclusive doesn't pertain to all women with disabilities. Our guides recognized our discontent and agreed to an ongoing conversation about the lack of accessibility for all women. We exchanged cards and agreed to follow up.

Perspective: Getting Into a Feminist Disability Rights Frame of Mind...

Over the last two years that FRIDA has maintained this blog, I've been very pleased to see that, across the digital world, people have been thinking a lot more about feminist disability rights and the relationship between what we in FRIDA call "mainstream feminism" and the disability rights movement. I was looking at this post at The Curvature http://thecurvature.com/2007/09/03/disability-is-a-feminist-issue/. This writer made me very happy because she really batted .500 in terms of connecting the feminist struggle with an ongoing issue in the disability rights movement.

Lest readers think that all we disability rights activists care about is the Jerry Lewis/MDA problem, let me provide a list of feminist disability issues that are also shafting people out of full and equal lives:

Domestic violence and sexual assault services are generally not accessible to people with disabilities, though we've been been advocating for access for thirty years;

Parents with disabilities still often face the possibility that their families or social services will take their kids away just because the mother (or father) has a disability;

Women with disabilities are more likely to suffer physical and mental abuse;

Girls with disabilities are more likely to become pregnant in high school;

Women with disabilities are generally considered less attractive dates and partners;

The rights and experiences of women with disabilities who are institutionalized are by and large unexamined;

People with disabilities have historically been denied reproductive rights and bodily integrity through forced sterilization;

Women with disabilities experience bias in receiving medical services; such as inaccessible examining table and incomplete medical records (because "why would she care anyway? she's retarded!");

A lack of qualified personal care assistants and in home services forces many women with disabilities to stay institutionalized;

Deaf women who use sign language lack access to information and programs because the people who provide such services don't know how to locate and pay for interpreters;

Captioning is not provided on many informational programs designed to empower women;

Women with disabilities, especially young women with physical or cognitive disabilities, are patted on the head and spoken to like children;

Women with disabilities who are institutionalized are not provided with training on how to manage their periods, or are left to sit in their blood and feces until an attendant can get to them, which often takes hours;

Regardless of ethnic or sexual identity, women with disabilities are usually considered among the least of us, not only because they are women but because they are disabled.

There are about 28.5 million women in the US with acknowledged disabilities. Our disabilities range from diabetes and HIV+ to deafness, blindness and physical disabilities like spina bifida. Somewhere between 60 and 70% of us are unemployed. A number of us are in jail or prison. A lot of us have kids. Some of us are sex workers.

Engaging with disability rights in a meaningful way is critical for feminism. What's interesting is that we have a lot of powerful women advocates with disabilities and a powerful body of knowledge, so in reality, when disability rights activists engage with feminists, we really are not starting from square one but have a great deal to discuss and exchange. The problem seems to be just opening that door. I don't think we are faced here with an issue of yet another identity group clamoring at feminism's door-because we're doing that already! we ARE feminists; rather, I think the issue is for us instead to be asking each other, is feminism including everyone? Are we actively asking questions, instead of busying ourselves with gatekeeping "FEMINISM"?

In my own life, while I grew up with parents who role modeled advocacy and empowerment, to be honest it is disabled feminists who I have found most challenging and most helpful to my feminist personal growth. There are a lot of strong disabled women, and not just women but disabled people with a feminist outlook, who are actively fighting to live the lives they want. I say "fighting" because they are being kept from making certain types of choices by social and bureaucratic barriers. A lot of them are members or allies of FRIDA.

Most of us FRIDA people are not feminists by scholarly training or women's group training. I am not. I think we are people who instead seek to be able to make choices; to be independent rather than dependent; who want to love our bodies and love other people's bodies; who take pride in ourselves and in being together in a feminist cause; who take offense at injustice and look at things by asking, "Is it fair to ask women with disabilities to put up with certain things when the rest of the world can do as they choose?" I think FRIDA women also have a lot of guts---because we ask not only what is good for us, but what is good for society, and we try to do something about it.

And if you want to DO something small to learn about society's struggles with women with disabilities just for today, go and Google the names of the following: Carrie Buck, Elizabeth Bouvia, Sharon Kowalski and Karen Thompson, Tracy Latimer, Lois Curtis and Elaine Wilson, Terri Schiavo, Haleigh Poutre, Ashley X, Katie Thorpe.