December » 2009 » Danine N. Spencer

Women Living with Disabilities: Anna

Editor’s Note: This is the first in what I hope will be a long series of interviews with women living with disabilities and/or chronic medical conditions.

Name: Anna
Bio: I’m a full-time MA history student. For reasons that will, I think, become apparent throughout this interview, it’s not wise for me to go into more details about my personal life.

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I have a mental health condition. I don’t feel comfortable telling people the exact diagnosis because I’ve seen it far too often used as an excuse to start bashing women who are diagnosed. So I will just say I have a form of PTSD, and that women ‘like me’ have a “high rate” of successful suicides and tend towards dangerous self-harming behaviour.

My mental health condition is very cyclical in nature. At the moment I’m in the middle of a very bad point in the cycle. I don’t sleep much, I don’t eat much, I’m constantly convinced that people are out to get me, I have panic attacks, I can’t answer the phone, I’m afraid to check my work-related email, etc.

At other times, everything is fine. (It’s hard for me to write about what ‘fine’ looks like, though.)

The difficult aspect is that part of my condition includes what’s called “emotional amnesia”. When I’m down, I can’t remember how long I’ve been down – I feel I’ve been this way for months or even years. When I’m up, I think I’m always happy. It makes it difficult to treat things realistically in terms of what I’m capable of.

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

I have a really difficult time adopting the term “disabled” and applying it to myself. THOSE people, over there, they have REAL disabilities, that should be respected. Me? I’m just lazy/bad/selfish/whatever. (Which is how women with my diagnoses are often referred to, as well.) Saying “I am disabled; I have a mental health condition” is a big deal to me.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

Since I typically chose not to self-identify, I don’t get treated differently. But, I am aware of the stigmas around mental health, and read the reactions to people in my field identifying as having a disability. It really depends on where you are in your career. And I’m not in a place where saying “I’m crazy, I take crazy meds, and sometimes I’m sobbing uncontrollably for hours because someone was mean to me” is going to help me get a job. Google is not my friend.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

I am not my condition. I am Anna; I have a condition. I am not everyone you’ve ever interacted with who has been diagnosed. I am not your textbook case. Telling me how women who have been institutionalized due to my condition behave doesn’t tell me anything except that you’re making assumptions about me – we’re not interchangeable cookies.

5. What do you like about living with your disability/condition?

It’s hard to say – I can look back at my life and see the seeds of where I am now as far back as being 10 years old. I don’t know what it’s like to not have this mental health condition.

I like that I care about people – I’m told that the degree of my caring is a symptom.

6. Is there anything else you’d like to share?

People tend to get angry or dismissive of my concerns about self-disclosing. Because I won’t link to specific examples of people attacking women like me (for obvious reason!) they don’t believe that it could be that bad. Believe me: it is. Announcing to the world what’s “wrong” with me could scuttle my entire career. It’s happened before. We are not in a world where stigmas about mental health are non-existent.

People I have talked to about this have suggested that I be brave and self-identify, to combat the stigma. Those people have jobs. I’m struggling to make a career for myself in a very narrow field. “Anna” is a pseudonym that I use on the internet (and is also a part of my given name) and in social situations.

Maybe, if I had a career behind me, I would be willing to ‘come out’ explicitly, but I’m not there yet.

Image courtesy of Danine’s garden

Call for Interviews: Women with Disabilities and Chronic Medical Conditions

I am not an expert on disability.

I have been hearing impaired my entire life and worn hearing aids since I was three years old. I have lived with hydrocephalus and Dandy-Walker Syndrome since I was diagnosed at five years old. Four and a half years ago, I became quadriplegic after a freak illness. I’ve recovered my mobility but I still have many health problems.

I’ve told my story over and over again not to bore my loyal readers but because I believe it is vitally important to tell my story. I want to put a woman’s face on spinal cord injuries and paralysis.

I think the best way to help other women with paralysis and spinal cord injuries is to tell my story, to demystify this crazy injury. I believe – I hope – that by speaking out, I am empowering others.

However, this is only my story. I would like to hear yours. If you are a (cis or trans) woman with a disability or a chronic medical condition, I’d like to interview you for this blog. I am interested in what it’s really like to live with your disability/condition on a daily basis, how it affects you, any discrimination/barriers you face and even what you like about living with your disability/condition.

If you are interested in sharing your story, please email me at danine@danine.net. I will be happy to work with you to conduct the interview in whatever format best meets your needs.

Cartoon originally from WillDrawAnything.com

Human Trafficking in Minnesota (and Your State, Too)

I was reading the Racialicious blog this weekend when I came across a link to an article that shocked the hell out of me: Trafficking Of Native Women is widespread.

It begins with these words:

Three decades ago, the relatives of an eleven-year-old Native girl in Minnesota forced her to have sex with a man in exchange for alcohol. The story was not front-page news. It was not the subject of a feature-length film with a happy ending. No one intervened. But when she turned eighteen, the police started paying attention. She was arrested and convicted over twenty times for prostitution. Her parents’ addiction became her own, and she entered treatment dozens of times.

At an early age, the girl became one of hundreds, maybe thousands, of Native American children and women forced into prostitution in Minnesota, falling under the radar of social services, the community, and the media.

The article summarizes the findings of a Minnesota Indian Women’s Resource Center (MIWRC) report on the widespread trafficking of Native women and girls in Minnesota. Yes, I said girls. In a study of 95 women, MIWRC found that sixty percent of women had entered prostitution or pornography before they turned eighteen. Twenty percent had started before they were thirteen. Thirteen years old!

There are a variety of reasons why Native women and children are being trafficked. Some are specific to the Native population (colonialism, violence against Native populations, forced sterilizations). However, the report drives home that issues that affect all of us can lead to trafficking: homelessness, poverty and alcoholism.

I found this article horribly disturbing because it highlights the trafficking of real people in places like St. Paul and Duluth, MN. St. Paul is 80 miles west of my hometown. Growing up, I would have never, in a million years, believed that anyone within driving distance was a victim of human trafficking. I am sure most of the middle-class, white suburbanites in Ramsey County, MN (where St. Paul is located), think that nothing like this could ever happen in their community. They’re wrong. So are the people in Duluth as well as Superior, Wisconsin. If human trafficking happens in Duluth, it basically happens in Superior, which is 5.7 miles away (according to Google Maps).

The bottom line is that human trafficking can happen anywhere. That’s what I learned by reading this article. If it can happen in places like Duluth, MN, and Superior, WI, it can happen in big and small cities in every state in this country. Human and sex trafficking is not just something that happens in India and Dubai. Apparently, it happens right here, in our own backyards.

Even though I feel woefully unprepared to do anything about human trafficking, the United States government does have some suggestions.

How Do I Identify a Victim of Human Trafficking?

A victim:

Has unexplained absences from school for a period of time, and is therefore a truant

Demonstrates an inability to attend school on a regular basis

Chronically runs away from home

Makes references to frequent travel to other cities

Exhibits bruises or other physical trauma, withdrawn behavior, depression, or fear

Lacks control over her or his schedule or identification documents

Is hungry-malnourished or inappropriately dressed (based on weather conditions or surroundings)

Shows signs of drug addiction

Additional signs that may indicate sex-related trafficking include:

Demonstrates a sudden change in attire, behavior, or material possessions (e.g., has expensive items)

Makes references to sexual situations that are beyond age-specific norms

Has a “boyfriend” who is noticeably older (10+ years)

Makes references to terminology of the commercial sex industry that are beyond age specific norms; engages in promiscuous behavior and may be labeled “fast” by peers

How Do I Report a Suspected Incidence of Human Trafficking?

In cases of immediate emergencies, it is best to call your local police department or emergency access number.

You can report suspected trafficking crimes or get help by calling the national 24/7 toll-free Human Trafficking Resource Center at 1-888-373-7888. This center will help you determine if you have encountered a victim of human trafficking; identify local resources available in your community to help victims; and coordinate with local social service providers to help protect and serve victims so they can begin the process of rehabilitation and restoring their lives. When appropriate, the Resource Center makes referrals to local organizations that assist victims with counseling, case management, legal advice, and other appropriate services, as well as to law enforcement agencies that help trapped victims reach safety.

For sexually exploited or abused minors call the National Center for Missing and Exploited Children’s (NCMEC) hotline at 1-800-THE-LOST to be connected with the most appropriate assistance in your area, or you can report incidents at http://www.cybertipline.org.

You can report suspected instances of trafficking or worker exploitation by contacting the FBI field office nearest you at http://www.fbi.gov/contact/fo/fo.htm or by contacting the Department of Justice’s Human Trafficking Office at 1-888-428-7581.

Despite these well-meaning helpful hints, I am overwhelmed by the idea that women and children are trafficked in communities much like my own, if not my own. I am not sure what all this means but please start to think about these issues. Be aware that this can happen in your town, because anywhere there is poverty and desperation, anywhere someone is willing to pay for sex, vulnerable persons are probably being trafficked. That’s my assumption, anyways. Prove me wrong. I dare ya. That’s one dar, I’d like to lose.

I lost a little bit of my innocence by reading this article. I wish I could get it back, but now that it’s gone, I am going to try to find a way to do some good.

I’m just not sure how.

Stop Stupak-Nelson

Note: The following is a letter to the editor I wrote that appeared in the Eau Claire Leader-Telegram and Madison Capitol Times (both in Wisconsin). The Stupak-like amendment was introduced in the Senate today by Sen. Ben Nelson (D-NE) and will likely be voted on tomorrow (Tuesday, December 8th) so call your senators at (888) 423-5983 now. The U.S. Capitol switchboard is open 24/7 so when you ask for your senators’ offices you may get voice mail. Leave a message!

Without further ado, let’s Stop Stupak!

Dear Editor:

On November 7th, the House of Representatives passed its version of health care reform, which included an anti-abortion amendment sponsored by Rep. Bart Stupak (D-MI). According to the American Association of University Women, the Stupak Amendment will prohibit “women who receive federal subsidies from purchasing a comprehensive insurance plan that includes abortion services. Private plans that offer abortion coverage would be banned from receiving funding.”

The Stupak Amendment goes far beyond the 1976 Hyde Amendment, which prohibits federal funding for abortion. Insurance companies participating in the new insurance exchange who receive even one dollar of revenue from federal subsidies will be banned from offering any policies with abortion coverage. An analysis of the amendment by George Washington University found it “will have an industry-wide effect, eliminating coverage of medically indicated abortions over time for all women.”

Abortion is a currently a safe, legal medical procedure. One in three American women will have an abortion by age 45. The risk of death is less than 0.6 per 100,000 procedures here in the U.S. In contrast, 68,000 women die each year in countries where abortion is illegal. (Guttmacher Institute) The Stupak Amendment threatens to take women back to the days of unsanitary back-alley and dangerous self-induced abortions with wire hangers. The Stupak Amendment is not about “unborn” fetuses but saving the lives of women who are already here: daughters, sisters, wives, and yes, even mothers.

Stop the Stupak Amendment. Call Senators Feingold and Kohl. Tell them to vote “no” on Stupak.

Image courtesy Stupak Amendment REVOLT (Facebook)

Sen. Feingold Explains "No" Vote on Mikulski Women's Health Amendment, Sort Of

In yesterday’s post, I wrote about Sen. Feingold’s puzzling and infuriating “no” vote on the Mikulski Women’s Health Amendment, which will require women’s preventative health services to be full funded by insurance companies. I emailed Sen. Feingold’s office, expressing my anger and disappointment in the senator’s vote. I also made some comments on Twitter, encouraging others to email and call his office.

I was not the only one who noticed Sen. Feingold’s somewhat-peculiar vote. David Dayen over at the influential Firedoglake.com took note, as did the Washington Post, Los Angeles Times and Politico. By last night, Sen. Feingold’s office released this statement:

I am disappointed that the Senate health care debate has gotten off on the wrong foot. The first amendment voted on would add almost a billion dollars to our budget deficits over the next 10 years. We should make sure health plans cover women’s preventive care and screenings, but we should also find a way to pay for it, rather than adding that cost to the already mountainous public debt. At a time of record deficits, Americans expect fiscal responsibility from their representatives in Congress.

I also received a reply to my email from Sen. Feingold’s aide early last evening. She assured me that Sen. Feingold is a strong supporter of women’s access to health care and preventative services and that his “no” vote was “was not about the policy of the amendment.”

I believe her. I know that Sen. Feingold is a deeply principled man who has decided to take a stand on fiscal responsibility. He recently introduced a new bill, Control Spending Now Act, the purpose of which is quite simply, “to control Federal spending now”. I also appreciate that Sen. Feingold has been an advocate for women’s health. He sponsored a resolution that the Senate support “the goals and ideals of National Women’s Health Week”. He is a co-sponsor of Sen. Shaheen’s resolution condemning violence against women’s health (read: abortion) providers. He is a co-sponsor of the Breast Cancer Education and Awareness Requires Learning Young Act, which will raise awareness and provide support for young women with breast cancer. Sen. Feingold also deserves major kudos for being a co-sponsor fo the Paycheck Fairness Act and for recently co-chairing a hearing on rape as a weapon of war with Sen. Boxer in May.

So, yeah, Sen. Feingold usually walks the walk on fighting for women’s rights. He’s definitely a male ally. He really dropped the ball on this one, though. As I told the senator’s aide, it feels like he sold women out to uphold his pledge of fiscal responsibility. One billion dollars is basically chump change in Washington. If he was really concerned about the money, he should’ve worked with Sen. Mikulski to find the money to pay for her amendment. She announced she would be introducing the amendment before Thanksgiving, over a week ago. There was time for negotiation on this one.

After all is said and done, here’s what I think happened: I think Sen. Feingold knew there were sixty votes to pass the amendment. Sen. Snowe was a co-sponsor (way to go, Olympia!) and Sen. Collins probably made her intentions to vote for the amendment known as well. Sen. Feingold probably had political cover to vote against the amendment and went for it.

He still should’ve done the right thing, though.

Sen. Feingold Votes No on Mikulski Amendment to Save Women's Lives

Today was a great day for women’s health. The Mikulski Women’s Health Amendment passed the Senate 61-39. However, in a move that shocked and infuriated me, one of my senators, Russ Feingold, a Democrat, voted against the amendment.

Because Sen. Feingold told my health care story as part of a speech advocating for a strong public option in June, I have the email address of one of his staffers and just sent them an email expressing my outrage over the senator’s vote. You can read it below.

I encourage you to contact Sen. Feingold yourself and tell him his “no” vote against women’s health was not acceptable. Call him at (202) 224-5323 or email his office here.

Here’s my letter:

Ms. xxxxx,

As a woman and one of Sen. Feingold’s constituents, I am extremely angry he voted against Sen. Mikulski’s amendment for women’s health today. This vote was not about money (the only reason I can think of that Sen. Feingold would vote no), but about saving women’s lives. This was a vote about morality, not money.

Sen. Feingold was elected to serve the people of Wisconsin. That includes the women of Wisconsin, all 2.8 million of us (from 2008 census estimates). Sen. Feingold needs to explain this vote to his female constituents. He needs to explain it to me, my mother, my sister, my aunts, my cousins, my friends and my neighbors.

Senator Feingold needs to explain this vote. He should apologize because it was morally reprehensible and wrong.Sincerely,
Danine Spencer

Every Day Should Be World AIDS Day

Today is World AIDS Day 2009, a day to raise awareness of HIV and AIDS worldwide. We pause to remember the nearly 600,000 Americans who have died of this horrific disease and pledge to help those living with HIV/AIDS. The CDC estimates that more than a million people are living with HIV/AIDS and that number is growing, with 56,300 new infections in 2008 alone.

World AIDS Day is observed on December 1st and has been every year since 1988 when the World Health Organization marked the occasion as a way to “to raise awareness and focus attention on the global AIDS epidemic.”

Every year, we trot out the red ribbons (see above) and alarming statistics. We pay lip service to the cause of fighting HIV/AIDS but are we actually making real progress at fighting the disease?

I know I’m not doing my part.

In middle and high school, I volunteered for the AIDS Resource Council of Wisconsin and was a member of their Teen AIDS Prevention Program (TAPP). TAPP was a small group of peer educators who went to local schools and community groups. We talked to middle and high school kids about what HIV/AIDS is, how you get it (direct contact with blood, semen, vaginal fluid or breast milk), and how you don’t get it (You cannot get AIDS from Sammy peeing in the school pool. Nope!)

We explained that you need to take universal precautions when dealing with bodily fluids that transmit HIV. We explained that giving and receiving blood is safe, that the Red Cross screens all blood for HIV.

We also talked about sex. We talked about the fact that abstinence is the only 100% way of not getting HIV, but if you’re going to have sex, you need to use protection: condoms and dental dams. We demonstrated how to put a condom on using our for-demonstration-purposes-only dildo, Pete the Purple Penis.

Prevention efforts like ours helped. A study at Johns Hopkins found the HIV transmission rate has dropped 33 percent since 1997, the year I left for college and stopped working with ARCW. That’s great news. Still, when more than a million people in the United States and more than 33 million people worldwide are living with HIV, we are not doing enough to stop this disease.

Every day should be World AIDS Day.

Here in the U.S., we need to eliminate abstinence-only funding and teach age-appropriate, comprehensive sex education in every state and every school district. I was lucky enough to attend health classes in the Eau Claire, WI, school district, where health teacher Deb Tackmann constantly fought with the school board and the community to include real sex education in the curriculum: HIV/AIDS, STDs, teen pregnancy and contraception (including condoms).

Everyone needs to know this information. Here in Wisconsin, the legislature is considering the Healthy Youth Act (AB 458 & SB 324). According to Planned Parenthood of Wisconsin, the Healthy Youth Act:

requires schools that teach sex education to do so in a responsible, comprehensive manner that includes information about abstinence and sexually transmitted infections (STIs) and pregnancy prevention strategies, such as birth control and condom use.

If you live in Wisconsin, please contact your state senator and ask him/her to vote “yes” on the Health Youth Act (SB 324).

Another step we can take to prevent HIV/AIDS is to eliminate federal funding for abstinence-only education. After President Obama stripped abstinence-only monies from the federal budget, Senator Reid has included language in the Senate health care reform bill that will re-authorize abstinence-only funding for another five years. Call your representative and senators: Tell them to remove abstinence-only funding from health care reform.

We can also volunteer or donate to a local AIDS service agency. Check your yellow pages for one near you.

There is much more we can do to prevent HIV/AIDS here in the U.S. There’s no excuse; we should be doing it.

To learn more about the global AIDS epidemic and how it affects women, click here.