On January 31, 2008, Dorothy Dixon was found dead in the home she shared with five others in Alton, Illinois.  She had been burned, beaten and starved to death.  She had a developmental disability, was pregnant with her second child, and was 29 years old.  Dorothy was also a woman of color.  Six people were charged with torturing her to death, including another woman with a developmental disability.  The initial cause of the abuse allegedly stemmed from a fight over Dorothy’s SSI check, which her caregiver was using to help pay the rent.

Shocked and horrified by what had happened to Dorothy, and disgusted at the lack of mainstream media coverage of the case (as opposed to such examples of nondisabled, white murdered pregnant women as Laci Peterson), FRIDA wanted to memorialize Dorothy’s life as a fellow sister with a disability.  We reached out to IMPACT CIL in Alton as our partner to hold a memorial service and march in honor of Dorothy’s and her unborn child’s life.

Nine FRIDAs from Chicago traveled to Alton for the Dorothy Dixon memorial service at 11 am on May 31.  We joined with several IMPACT CIL staff and community members.  Afterwards, we walked, rolled and drove in a procession to the home where Dorothy and her unborn child died.  We chanted “What do we want? Justice! When do we want it? Now!” and “Up with respect! Down with abuse!”  The residents of the house joined us in a moment of silence.  We were escorted by patrol cars from the Alton Police.  Thank you officers for keeping us safe!

 We then gathered at IMPACT again for lunch and a break.  Several of us then visited the grounds of the old state hospital at the Alton Mental Health Center.  IMPACT Board member Susan Shobe gave us a tour of the field where state hospital residents were buried.  Security officers from the Department of Human Services joined us.  It was extremely hot but very moving to be able to visit these grounds.  Due to the heat and logistics, some of our group left, but four of us were able to then stop at Mt. Olive to visit the memorial to Mother Jones, the famous labor organizer.

 We really want to thank our friends at IMPACT for their hard work in making this happen, and also to our friends from Springfield and St. Louis who came out for the day.  About 30 folks showed up to make sure the right thing was done.  It was a really tremendous learning experience.

To read about the Dixon case as a story of the year by the Alton Telegraph, please visit: http://www.thetelegraph.com/news/dixon_21712___article.html/charged_police.html.  This is the most recent information we have on the case.

To read the Alton Telegraph news story from May 31, 2008, please visit: http://www.thetelegraph.com/news/dixon_14619___article.html/people_group.html.

To read about the six people charged with Dorothy’s murder in March 2008, please visit: http://www.thetelegraph.com/news/old_11972___article.html/year_hillcrest.html

To view some photos of the trip on Flickr, please visit http://www.flickr.com/photos/25181282@N04/sets/72157605386361303/.

On Saturday, March 29, 2008, FRIDA hosted our first ever Sex and Disability Town Hall meeting.  Overall, about 75 people attended from many different areas of our community.  Thanks to everyone who attended and to those who staffed the event!  Folks had such an eager spirit to learn and the whole setup was done with creative flair (yes, we had penis and vagina cakes).

The morning was devoted to workshops and the afternoon was spent on a speakout forum where community members could have their say.  Workshop topics included sex resources for people with disabilities, psychiatric disabilities and relationships, an LGBTQ forum, and a showing of “Doin’ It: Sex, Video and Disability,” available at http://www.beyondmedia.org/catalogue.html and made by young women with disabilities ages 16 to 24.

Several organizations tabled at our event, including the RIC Domestic Violence Program, the Schwab Rehab AIDS and HIV Prevention Program, Early to Bed, Chicago ADAPT, the Disability Pride Parade, 3E Love, the Chicago Abortion Fund, the UIC Institute on Disability and Human Development, and of course, FRIDA.  Many thanks to those who made donations, including Jimmy John’s for a steep discount on sandwiches!

Overall there was an incredible feeling of sharing and open mindedness about many ways to express sexuality.  We had folks of all ages (from teens to sixties) and all colors of the rainbow too.  Both disabled and nondisabled women attended.  We were all excited to meet new folks from the community and make new friends.

 The following notes were taken by Jenny Choi.  Thank you Jenny!

How and where can we meet people for dating or relationships without going online?

The Internet can still be a good place to meet people. 

• Safety can be a concern. 
• We need more sites for disabled people. 
• Try to go out more to increase your chances of meeting someone.

Have the inner strength and self confidence to meet people. Try a phone buddy, Access Living, FRIDA (support network)

Defining sex:

• Can be wild or mellow.
• Beautiful.
• From the heart, not looks.

What is a visit to the gynecologist like? 

• The Fe Fes discuss this. 
• It’s a bit intimidating the first time. 
• There is a pelvic/vaginal area exam.
• No needles! Not anything too scary.
• It’s important to have an exam once sexually active to protect your health.

Sex is not just penetration

Different levels of sex for different people

For women who date other women, it can be a hand, a finger, a sex toy etc.

Foreplay is also important.

Definition of sex could be no penetration at all (it doesn’t have to involve a penis).

“Make love to my mind” (by talking)

What is foreplay?

Making love to a woman can be the way you say “good morning.”  Treat her well, etc.

Touch/intimacy is important (a hug, etc).  Skin to skin contact.

Why do people choose celibacy?

• Religion
• Sexually transmitted diseases (STDs)
• parents’ values/culture
• interest in sex wanes

Why do people make fun of virgins?

• Jealousy by people who regret some choices they’ve made.
• Very few virgins.
• It’s important to respect a person’s choice not to have sex, or to wait to have sex.

Older women can want and enjoy sex.

Sex ed should be more inclusive

• Lack of knowledge
• Schools in general are behind in educating about the disability movement

Sometime a woman with a disability needs to be more forward, etc in approaching people.

• People are tentative if they are unfamiliar with disability culture

Women with disabilities can have one-night stands

• How to deal with self-disclosure on private or personal matters
• You don’t have to self-disclose if you don’t want to
• You can make your own choices

We should have sex because WE want to.

If a man calls you a ‘ho,’ he is insecure.

Safety issues: going out alone (and not with a man)

• Our society has certain expectations on how a man or a woman is supposed to behave.  Challenge those expectations.

Women need to learn to protect each other.

If you have an attitude of dominance, it might help safety issues.

You should be able to have as much sex as you want without judgment.

Be true to yourself.

It’s not anyone’s business who I have sex with, or how many times I have sex.

We should celebrate all of our choices as women.

• We can disagree, but not judge
• Keep negative opinions to oneself
• Maybe organize a group to address these issues (by age, disability…more like a support group)

When is the right time to have sex?

Embace differences, uniqueness.

Men who take out their frustration on women have unhealthy issues (the way they grew up, cultural expectations, etc).

• Avoid people who try to dominate you.
• Women are sometimes afraid of being taken advantage of because of their disability

Many thanks to everyone who worked on this project!

In October 2006, two Seattle doctors published an article in the Archives of Pediatrics and Adolescent Medicine (APAM) about a new “treatment” they called “growth attenuation,” which they had used on a six-year-old girl with static encephalopathy, or a form of cerebral palsy. 
The girl, now known as Ashley X, is nonverbal and cannot move herself.  Her parents were worried about having to institutionalize their daughter as she got older and too big for them to carry.  They requested that her doctors keep their daughter short through hormone therapy.  After getting approval from the hospital ethics committee with a presentation from the parents, the doctors went ahead and started Ashley on hormone therapy that today has her, at age nine, at around four and a half feet tall.  Presumably to prevent side effects from the hormones, Ashley’s uterus was also removed. The initial public reaction to the case was limited and sensational.  A story about the case was passed around in the disability community, but it was not until January 2007 that activists felt compelled to take action.  Ashley’s parents published a blog explaining what they termed “the Ashley Treatment.”  In addition to the hormone treatment and the uterus removal, they had also had Ashley’s breast buds removed (allegedly for fear she would develop breast cancer and be uncomfortable with large breasts) and her appendix removed.  The parents also did not consider community supports a viable option to help care for Ashley. 

Our community was shocked.  Young people in ADAPT initially immediately issued a statement opposing the “Treatment.”  Then FRIDA, in alliance with ADAPT and Not Dead Yet, staged a direct action on January 12 at the American Medical Association, which publishes the APAM.  Our coalition demanded:

1. That the AMA officially oppose the “Ashley Treatment.”
2. That the AMA support the Community Choice Act.
3. That the AMA establish a committee within the AMA to represent the interests of patients and doctors with disabilities.

The action garnered international media coverage amid a storm of debate on the “Ashley Treatment.”  Not since the case of Terri Schiavo had we seen such a level of discussion on the rights of people with disabilities.  The coverage was so far-reaching that FRIDA was actually contacted by radio shock jocks on the West Coast. 

This campaign, and our efforts, are documented extensively in our blog.

Some important outcomes to date are: Seattle Children’s Hospital was found to have broken the law because there was no court order for Ashley’s sterilization and is now in a settlement agreement with the Washington Protection and Advocacy Agency; the AMA now supports the Community Choice Act; and FRIDA is working with doctors to develop a committee for representation of disability interests in the AMA.  Many disability organizations came out with statements against the “Ashley Treatment,” one of the most unified responses we have seen in a long time.  If you are interested in working on this campaign, please contact us.The case continues to be discussed in medical professional circles and debated among bioethicists.  If you hear about an Ashley X discussion in your area, please contact us. 

For more information on this topic, you can also check out:

Ashley’s Parents Blog

Disability Community’s Response to Ashley X Case

FRIDA and Allies Go to AMA

Rebecca Clarren Article at Salon.com

Not Dead Yet

Katie Thorpe is a fifteen year old with severe cerebral palsy who lives in England.  In October 2007, her case came to light in the international media when her mother sought to have her sterilized because she felt her daughter could not handle having her period.  The case was the first of its kind in Britain and had strong echoes of the Ashley X case  Legally, Katie’s reproductive rights lay in a gray area and her case would be brought before a court to determine whether a medically unnecessary sterilization as lawful. 

In response, FRIDA issued a press release to support the advocacy efforts of Britons with disabilities against Katie’s sterilization.  FRIDA also educated the disability community at large about the case.   FRIDA encouraged people to write to Katie’s gynecologist and British public health authorities to explain why medically unnecessary sterilization is a violation of her human rights. 

Katie’s mother went very public about Katie’s day-to day needs, insisting that a hysterectomy would improve Katie’s life and prevent her from feeling pain that she would not be able to verbalize.  Katie’s inability to communicate makes it impossible for us to know what she would really want; yet FRIDA feels her human right to bodily integrity should be respected.  In addition, Britain must address the lack of in-home community supports for families such as Katie’s.

At present, there is no word on whether Katie’s sterilization has been approved.  Because the approval involves a legal decision, the British public has a right to know whether the bodies of other people with disabilities are protected from forced sterilization.

To read more about Katie Thorpe, please see:

Should the Court of Appeal allow Katie Thorpe’s womb to be removed?

Why Can’t You Let Katie Grow Up? 

To learn more about disability in the UK, please see:

Ouch!

Direct Action Network

Scope

In March 2007, the Texas case of Emilio Gonzales came to FRIDA’s attention. Emilio, then about 17 months old, had Leigh’s disease. He was deaf, blind, and it was believed that the disease was progressively breaking down his nervous system. On December 28, 2006, he was placed on a ventilator and feeding tube when he could not breathe on his own.

According to the Texas futile care law, his doctors could decide when there was no longer any point in caring for Emilio and once serving notice to his mother, could cut off his ventilator and feeding tube in ten days. The process was put in motion in March, when doctors felt there was nothing they could do to help him. With the support of advocates, his mother was able to get a temporary restraining order against the cutoff in order to buy time to find another hospital to care for him.

Advocacy groups and individuals then carried on one of the largest coordinated efforts to save a disabled person’s life since the death of Terri Schiavo in March 2005. FRIDA launched a grassroots effort to get Texas Governor Perry to issue an order countermanding the futile care law. FRIDA also worked to educate the national disability community about the case. Disability rights and pro life groups in Texas worked to continue to file temporary restraining orders and to find a new hospital for Emilio. Over 30 hospitals were contacted; none would take him. Disability rights advocates such as ADAPT of Texas, in coordination with Not Dead Yet, also sought to push changes to the futile care law in Texas through the Texas legislature.

A succession of temporary restraining orders kept Emilio alive without medical murder until May 20, when he died naturally in his mother’s arms at the age of 19 months. While mourning Emilio’s passing, advocates declared war on the futile care laws in Texas and Virginia, the only two states with such deadlines.

The Texas futile care law was born of the attempt by disability rights activists to fight back against the way things used to work in Texas. About six or seven years ago, doctors were able to simply pull the plug on patients with no warning to the family. The ten-day law was then passed by former Governor Bush to prevent those abuses. However, ten days is clearly not enough.

Emilio’s case was of particular concern to feminist disability rights activists for several reasons, beyond the overarching concern that the futile care law enabled doctors to devalue the life of a person with a disability.

Emilio’s mother, Catarina Gonzales, was only 23 years old and a single mom. She had stated that she wanted her son to live his own life without someone pulling the plug on him. She was accepting of his disabilities. She was also fighting not to have her only child’s life taken away because she had been told she would not be able to have another child.

As a Latina living in Texas, a woman, a single mom, a young adult and a person receiving Medicaid for her disabled son, could the systematic deck have possibly been biased against Catarina Gonzales? Is it possible that some of these factors might have affected Emilio’s doctors’ decision that his life was no longer worth living, and the refusal of over 30 other hospitals to accept Emilio?

We also wonder why, if Emilio was on a ventilator and a feeding tube, he was not allowed to go home on those systems. Why did he have to stay in the hospital, which is clearly not a home? Thousands of people with disabilities live on ventilators and feeding tubes. The empowered ones are not homebound and consider their breathing and feeding supports just part of life.

This case furthermore shows that the more things change, the more they stay the same. Emilio Gonzales strongly recalls, for those of us in the disability community, the cases of Baby Allen Bollinger in 1915 and Baby Doe in 1982. Baby Allen was born in Chicago with serious physical disabilities. On the advice of his parents’ doctor, he was left to starve to death and died when he was six days old. Baby Doe was born in Bloomington, Indiana with Down Syndrome. He had an esophageal condition which, without surgery, meant that he couldn’t swallow food and would starve. His parents opted not to have him undergo the corrective surgery and let him die. This “starvation option” is generally referred to as a form of medical treatment and not as murder.

Finally, Emilio’s case highlights a hot topic among disabled feminists regarding pro-choice and pro-life groups. Texas Right to Life spent a lot of energy supporting Emilio and his mother, with the perspective that everyone has a right to life. However, many disabled feminists are pro-choice, with the perspective that you can be pro-choice while still being informed on the idea that having a disabled kid is simply part of human diversity, rather than the end of the world. Disability should not be the deciding factor in considering an abortion. Pro-choice feminists with disabilities supported Emilio’s fight because he was a person with a disability, one of us, and our community knows full well how simple it is to dismiss someone’s life simply because they have a disability.

While it may appear on the surface that pro-life groups and feminist disability activists occasionally find common ground, in reality we aren’t actually sharing common ground. Instead, we really are seeing the situation from two different perspectives. The tension between these perspectives continues to remain a hot topic of discussion in the disability rights movement and in FRIDA itself.

Emilio’s legacy in our community has been to get us to examine and advocate on these issues, hopefully so that families do not have to face Emilio’s situation ever again. We salute his mother’s tenacity and the hard fight fought against the Texas futile care law.

Blood. It’s what unites us as women. It’s that cyclic reminder that we are part of the creative process, that we were designed to nurture life. Whether we choose to procreate or not, we all have that creative potential within.

But not everyone celebrates that potential within us. Not everyone allows us to take care of our most basic needs as women. In nursing homes across the country, many women are NOT supplied with pads or tampons, but are forced to purchase them out of their small allowances. A lot of women are afraid to speak out about this issue for fear of punishment by the nursing homes.

This is illegal. Federal Medicaid rules say that nursing home and institution residents must be supplied with basic sanitary items. If you know someone who is not receiving the proper sanitary items, this needs to be reported.

As a way to help those in immediate need, the Pad Patrol collected donations of pads and tampons and made them available to women in nursing homes and those with low income.  This project is currently on hiatus until further notice, but women should still report this problem to the proper authorities to deter abuse. If you want to report it but are not sure what to do, contact us.