Andrew shows that three floors, a cold night and a neighbor’s cat are no obstacle against safer sex. How far would you go to get a condom?
In this circumstance, I didn’t mind a bit of shrinkage! Copyright of condommonologues.com
As a lot of these types of stories go, it was after a very heavy night of dancing and drinking at Club Kali in London.
I hooked up with some random guy who had taken a shine to my, let’s say, bulge. We had stopped off on the way back for supplies. We reached his flat. We were ripping clothes off of each other and were getting wet and horny when I realised that I forgot the shopping bag with all the condoms and lube in his car!
Now this guy lived on the third floor of a block of flats in the middle of Hackney. And I was drunk and I was very horny. So I decided that there was no time to waste and didn’t put clothes on to run down to his car stark naked.
It was a cold night and for once I would have been glad of it to cause shrinkage. Because you see, this elderly neighbour got an awful shock when she let out her cat. So I did the polite thing and said good night, leaving her stammering as I walked back upstairs. I couldn’t help but laugh while pulling on the condoms. It was worth it to spend a happy few hours having very safe but very hard fun.
Monologues are independent stories. The opinions shared are the author’s own.
The first time I had sex with another woman I had no idea what I was doing. As I started to take off her panties, she said down to me, “Gloves?”
I remember thinking: “What gloves? What for?”
The practice seemed so esoteric to me. From then forth my whole orientation with safer sex altered. As a teen, I had not fully realized my sexuality and only had sex with (cis) guys. I was surrounded by sexual health messages that greatly encourage safety:
Understand birth control options, communicate with partners, get tested, use condoms.
But there was no enthusiasm for queer sexual safety. Saying, “Use gloves” or “Use a sex dam” is very different from “Use a condom”. None of my education went beyond the scope of heterosexual sex; specifically, penis-vagina penetration.
Clearly, this education ill-equipped me for the “real world”. But it also served a deeper function. Excluding information about safer lesbian sex, or more inclusively, sex between people with vulvas, maintained and reinforced the attitude that it’s not “real sex”, and that women-who-have-sex-with-women don’t really need to practice safety.
As a bisexual (cis) woman who has had penis-vaginal sex before, where did I fit into risks? Do people really use dental dams? Are gloves always necessary for manual sex? If so, why aren’t gloves promoted more among heterosexually-based safety messages? What sexual acts are less risky than others? I soon realized that I was not alone in the confusing and silent knowledge gap. The most powerful moment of this realization happened during a university course lecture in which we watched lesbian porn.
The class was titled, “The Sociology of the HIV/AIDS Pandemic”. That day we were covering the 1988 ACT UP protest of Cosmopolitan Magazine for publishing an article which (very erroneously) claimed that women were unlikely to contract and transmit HIV. The professor then dimmed the lights and switched on a porno short. Current Flow by Jean Carlomusto stars Annie Sprinkle and Joy Brown getting it on with an array of safer sex props ranging from condom covered vibrators to eating pussy with sex dams. The women fuck on the couch while a broadcast of the ACT UP protest faintly play on the television in the background. This video was specifically made to counteract Cosmopolitan. It was one of the first lesbian porn made by and for women that explicitly shows how to have safer sex.
The professor then bluntly asked the class, “Who here actually knew how to use a dental dam or understood the function of latex gloves prior to this video?
Only a few raised their hands. Among a group of predominately queer, early twenty-somethings this felt horrifying and shocking.
That activist porno is just as relevant today as it was 24 years ago. Lesbians and women who have sex with women, including those who are FAAB (female-assigned at birth), continue to be overlooked in the HIV epidemic. According to a 2009 review by the GMHC, very little research has devoted to the study of lesbian sexual play yet we are still learning new degrees of STI risks associated with different acts such as manual sex, fisting, tribbing, sharing toys and oral sex.
I’m lucky that my first time having sex with another girl was one that encouraged safer practices. Safety wasn’t optional. It was ethical. And it was hot. It opened up my world and cemented my desire to learn more, inform my options, and talk about safety confidently with other partners. But I know not everyone (and lesbians in particular) experiences such enthusiasm- including a lack of concern from medical professionals who assume “queer* women*” experience almost zero risk of HIV and other serious sexually transmitted infections.
For me, safer sex has developed a whole new dimension of excitement because of the political protest attached to it. Feminist mantra: “The personal is political”. It’s partly an acknowledgement that the sex I have with another woman is very real despite hetero-sexist attitudes. It’s also an intimate act of caring for and protecting each other.
Monologues are independent stories. The opinions shared are the author’s own. For more information on sexual safety for lesbians and women-who-have-sex-with-women, the National LGBT Health Education Center is a good place to start. Please do comment and share other recommended resources below.
Representation matters. This author shows that sex positivity and the adult market are no exception. Intersectional feminist, Takeallah Russell, is challenging the ethics of fantasy by speaking out against the fetishization of racial stereotypes. She takes the legacy of Zane to the next level, carving out sexy, explicit spaces to celebrate bodies of LGBTQIA folks and people of color in diverse and dignified ways. Her sex positivity is about building communities in which fetish no longer capitalizes on racial stereotypes.
1) Identify one or two trends, or influential people in the Sex Positive community that you identify with (or are inspired by) and those trends which you relate to not-so-much.
As a Woman of Color, I have always admired Zane and her novels! To be so bold and explicit and market specifically to the African American community, who can be quite conservative about sex, is beyond honorable. Zane’s work inspired me to launch my own sex-positive, inclusive site, “The Erotica Cafe.” From watching porn, to reading blogs and novels, all that is seen is white, cisgendered, heterosexual characters. White, cisgendered, heterosexual people are not the only people that fuck! The erasure of people of color and LGBTQIA people in the sex-positive movement has greatly contributed to ongoing negative stereotypes (i.e. bisexual people are greedy, asexual people do not exist, etc.) and fetishization. With “The Erotica Cafe”, I plan to debunk these negative stereotypes and contribute to making sex a normal, healthy aspects of many people’s lives; Not an instance where one turns red whenever “sex” is mentioned. It’s time we all stop shying away from human sexuality and embrace it.
As sex positive as I am, there is one aspect of sexuality that I despise– fetishization based upon one’s race or ethnicity (particularly women of color). Being fetishized based upon one’s skin color and false expectations is a dehumanizing, demoralizing act, which only leads to more negative stereotypes and more sex negativity. We are not monolithic, exotic, hypersexualized beings. We deserve to express our sexuality in a healthy manner while being given respect and maintaining our dignity.
2) How do you define “sex positivity” for yourself and your work? In other words, what is your primary passion and how do you distinguish your writings and interests from other branches of thought within the sex positive movement? My sex positivity is Afro-Latina and Native American, and holds Women of Color in the highest regards. My primary passion in sex positivity is normalizing Women of Color and debunking negative fetish-based stereotypes, which distinguishes my writings and interests from other sex positivists.
3) What directions do you think sex positivity will take within the next 5 – 10 years? Or what topics and with what platforms would you like to see sex positivity develop more thoroughly within the next 5 – 10 years?
Within the next five to ten years, I would like for sex positivity to be more widely embraced and common. I hope to see more white, cisgendered sex positivists more knowledgeable about people of color and queer people’s struggles in the sex positivity movement and make their brands more inclusive. For example, people of color in porn would not just be a niche fetish, but rather normalized across all genres. The early 1990s work of Jean Carlomusto is a star example of alternative pornography, particularly of lesbians of color. Also, feminist, comprehensive sex education should be required in all schools, nationwide and male and female/internal condom should be readily available for students.
Opinions shared are the author’s own. Want to participate in this interview series? What is your sex positivity?
A riart Grrrl, a folklorist and a condom monologuer get together to discuss the phenomenon of real-life storytelling in the context of sex education
The three authors of this post come from different trajectories in the field of sex and sexuality but we share the belief that real-life storytelling should play an intrinsic role in sexual health and relationships education (SRE).
Here we discuss the need for real-life stories that address safer sex practices and how to navigate health risks in relevant ways. Dr. Jeana Jorgensen and Xaverine Bates both explain that sharing real-life stories has transformative power to validate perspectives which may be overlooked or silenced in public discourse. Storytelling has the ability to convey scenarios that one may never have imagined before. Hence, they raise awareness about social issues and invite people to learn and unlearn ways of looking at bodies and desires. As stated by Xaverine Bates, founder of riart Grrls and aGender, “The power of storytelling is crucial for truly effective sex and relationship education (SRE), with a firm emphasis on emotional health in order to foster a deep understanding of what constitutes a healthy relationship.”
Taboo Manages How We Talk about Sex
Dr. Jeana Jorgensen, folklorist and writer at MySexProfessor.com, argues that due to social taboo towards talking publicly about sexual experiences, these life stories
“are limited to settings where the teller doesn’t have a professional or personal stake in the listeners’ reactions. I think this is unfortunate, because personal narratives are really potent genres for education. When someone tells a personal narrative, they not only educate the listener (by conveying facts about their life), but they also invite the listener to empathize with them and consider their values.”
Jeana continues, “So, because of the taboo on oversharing about one’s sexual activities in many settings, people tend to share personal narratives on sexual topics within their peer groups, age groups, friend groups, and hobby groups. This guarantees that if you’re making yourself vulnerable by sharing sexual information, you’re probably doing it to a sympathetic audience. But it also means that you risk living within an echo chamber, and you’ll only hear stories that confirm your own set of values. To that end, I think it’s really important for people from diverse backgrounds to learn each other’s stories and thereby gain empathy for how different life circumstances can lead to a variety of life (and lifestyle) choices.”
The internet is one place where people subvert this taboo and overcome issues of access. At Condom Monologues we’ve circumscribed a bully-free space that aims to be as inclusive as possible allowing anyone to ask questions and share their experiences with safe sex (see our archive). Whether the admins agree with the storyteller’s values or choices is not the point. However, we do not represent everyone’s experiences and have our limitations. One can never control how stories are appropriated and re-purposed in the digital world, and that is a risk all storytellers face. But there are ways to protect identity as well as mediate discussion around sharing stories, such as workshops like aGender (explained below).
Teaching Which Facts with What Stories…
The taboo Jeana highlights also affects the way in which sex education informs students. Narratives in class are rooted in political interests and social fears around sexuality. Pleasure and desire are rarely mentioned even as a side-issue. Instead, young people are fed a platter of warnings and doom-laden data about STI epidemics and teen pregnancy. One need not look further than this and that mandatory abstinence-only assembly to be told horror stories about how boyfriends used “condoms that had holes in them” or told girls that if they use birth control “your mother probably hates you.”
Educators rarely offer information about safer sex beyond vaginal-penis intercourse. Diverse sexuality and the spectrum of (trans)gender identity are excluded. Addressing issues such as STI stigma, homophobic, transphobic and sexist language, cyber-bullying, sexting and sexual anxieties are inadequate at best.
Medical information is often presented without context nor provide students with diverse options on how to apply these facts in real-life sexual relationships. And that’s if we can call them “facts” to begin with! In the US, only 13 states require sex education to actually be medically accurate, according to a 2012 study by the Guttmacher Institute. Meanwhile, in the UK, Xaverine explains that “there is currently a bias towards the biological side of SRE” which “favors plain biological facts” without focus on issues of enthusiastic consent and emotional confidence.
What Young Adults are Saying
Students’ experiences in sexual health class are telling. As a college instructor, Jeana hears young people share their experiences in sex education which, she explains, “constitutes their own type of personal narrative. The topics that people remembered tended to be biological rather than emotional; physiology was covered, but not necessarily relationships or pleasure.”
Xaverine agrees. She points to testimonies by 19-21 year olds who participated in women’s-only focus groups that examined the effectiveness of SRE (Kavanagh, 2011).
For example, one participant said,
I was like scarred by sex education at secondary school, they came in with like these big blown up pictures of STIs and stuff and said, you know, if you have sex and stuff this is what will happen to you. It was horrible…(ibid, p-13).
All focus-group participants commented on the lack of relationship education in schools with an emphasis purely on the biological. As one put it,
I think relationships and morals and respect need to be put back in place, for everyone, not just males or females, and I don’t believe in the saying nothing (abstinence teaching) because I think if everybody was to turn around to me and be like, you’re not doing this, you’re not doing that, I’d do it…I’d rebel (ibid, p-15).
“Comprehensive” SRE is in dire need of revision. Negligence of these topics results in an unsafe, non-engaging space that silences and restricts young people’s sexuality and gender identity. Students are left inarticulate about what they want, what they need and how to manage risks. Thus the vicious cycle of sex-shaming continues and proliferates the spread of STIs and unhealthy sexual relationships.
Changing Narratives
Failures in sex education programs are the reason why organizations like aGender exist. In an attempt to move beyond standard curricula, Xaverine states that “opportunities need to be made for young people to talk about their fears, expectations and experiences of sex and relationships in a healthy and supportive environment…without fear of embarrassment or repercussions from peers, teachers, parents or carers. This is what we are aiming for at aGender.”
“aGender is beginning its pilot project this month, which consists of a series of workshops to complement an exhibition, txt, at Claremont Studios in St Leonards, which will be a collection of contemporary visual artworks that incorporate written word. The exhibition will explore the tension and complexity created when a word is used not only for its literal meaning but also as a visual cue to lead through to layers of subtext and implied meaning. In light of the current reports on the psychological impact of texting, sexting and cyberbullying on young children, SMS messaging and the power of seemingly innocent words to imply malicious, threatening messages- it is anticipated that the challenging nature of the artwork will be both engaging and inspirational for them both as viewers and as participants in the workshops.”
Storytelling as a Transformative Process
Storytelling has played an important role even during the preliminary stages for aGender. Xaverine explains,
“As part of our research in planning the workshops, which cover texting, sexting & cyber-bullying, we have had many discussions within our focus group about how best to tackle such a difficult subject. As a result, we have shared many of our own experiences of sex education, our own relationships, previous abusive situations and much more, all through the medium of storytelling.”
Image from Xaverine Bates’ blog depicting ‘Peepshow 2’, one of her live art performances with Miranda Sharp on gender stereotyping and class.
She continues, “It will be fascinating to hear the young peoples’ stories . We are planning to have a multi-platform element to the workshops, incorporating social media of their choice (e.g. instagram, twitter, etc.) to encourage young people to engage with the subject in the days between workshops. This way we will hopefully elicit more stories that they may feel uncomfortable in telling us directly, as many feel more comfortable revealing personal information via social media, which ironically is one of the reasons that the problem of sexting has arisen in the first place – the illusion of anonymity and neutrality has enabled young people to feel that exposing themselves in their bedrooms is acceptable to post online, to potentially thousands of viewers. This false sense of security is what leads to the repercussions as seen in aggressive bullying and cyberbullying.”
aGender’s project is one example in which artful use of information and communication strategies can re-engage public awareness and find new ways to talk about being a body, being sexual, and negotiating healthy relationships. Jeana also pinpoints the transformative phenomenon of personal storytelling and listening. She describes how sharing experiences of sexual assault can help challenge shame and affirm agency over one’s narrative. Jeana states,
“One of the most powerful things I’ve witnessed when it comes to sexual storytelling is the importance of processing trauma through storytelling. Specifically, sexual assault survivors are often able to work through what happened to them by narrating the events in a way that is transformative and therapeutic. One of my mentors at Indiana University, Dr. Nicole Kousaleos, did her dissertation on how women who have survived sexual abuse can, in narrating their stories, experience greater agency in their lives. Narrating a story is also an invitation for listeners to respond, and in this case, the audience can help reinforce that the survivor was not to blame (since one of the biggest stigmas that prevents sexual assault survivors from speaking out is the tendency in our culture to victim-blame). I’ve observed this phenomenon informally, among multiple friends and acquaintances, and thus I believe that overcoming the shameful silence surrounding sexual assault is an important part of the healing process for many people.”
“Additionally, since one of the functions of personal narratives is to create intimacy and empathy, listeners can learn more about the reality of sexual assault. The numbers are already shockingly high -such as the CDC’s estimate that nearly 1 in 5 American women have been raped at some point in their lives- but numbers are abstract, whereas people telling their stories are concrete, real, human. Storytelling about sexual violence puts a face on the problem and helps to humanize it, and that’s why I believe it’s so powerful.”
Conclusion
People are inherently story-driven. The way we understand the world is through narrative. That is why first-person stories are very powerful in facilitating awareness and understanding, especially when they offer an experience of the world never previously imagined. What’s lost in the public discourse of SRE are the real, everyday lives of youth and adults, and making medical facts relevant to their complex needs and desires. The three authors here advocate for more opportunities for people to engage in safe and participatory spaces to actively listen and reflect upon stories.
Because there are so few authentic first-person narratives in sex education (especially a lack of non-heterosexual voices), storytelling provides us with non-stereotypical and often unexpected representations of people, gender roles and relationships. Stories should not be seen as merely anecdotal but as a potential source of knowledge for both the storyteller and the audience.
———– Kavanagh, K. (2011) ‘Priming Pubescent Sexualities; Sex and relationship education, without the relationship education?’ [unpublished]. For recent reports on cyberbulling and sexting refer to Ringrose J, Gill R, Livingstone S & Harvey L (2012). “A qualitative study of children, young people and ‘sexting’”. NSPCC.
You know, the sense of the historic moment hanging over these cases is incredible, and the atmosphere is really electric…As my husband said, it really feels like our very lives are before the court. But there’s no mistaking this historic moment. The momentum leading up to these hearings is incredible. Every day, when we turn to the headlines, there’s some new polls showing increasing majority support nationwide for equal marriage rights.- Stuart Gaffney, interview on Democracy Now!
Stuart Gaffney and John Lewis speaking on Democracy Now 26 March 2013
That is a quote from Stuart Gaffney, media director at Marriage Equality USA, describing what it felt like, both as a married gay man and an activist, to be in the Supreme Court watching the arguments about the constitutionality of DOMA. For those who don’t know, DOMA (Defense of Marriage Act) is a federal law enacted in 1996, that denies federal benefits to legally married same-sex couples.
Our LGBTQ-logue pays homage to this historic moment (the Supreme Court discussing the systemic discrimination of sexual orientation is landmark!) by hearing the family story of Stuart Gaffney and his husband John Lewis, together for 25 years. You can watch a full interview with them at DemocracyNow.org
is significant because it directly connects with the history of laws banning interracial marriage until the Supreme court deemed them unconstitutional in 1967. This issue came up in the Supreme court when Justice Scalia asked attorney, Theodore Olson, when it became unconstitutional to exclude homosexual couples from marriage.
Listen to Clip [sc_embed_player fileurl=”https://condommonologues.com/wp-content/uploads/2013/03/12-144-Hollingsworth-v.-Perry-trimmed.mp3″]
For the entire Supreme Court argument on March 26, 2013, listen here.
John and Stuart’s very own family story draws parallels of racial discrimination and discrimination on the basis of sexual orientation in marriage law. As an interracial couple, Stuart’s parents- mother Chinese-American and father English/Irish American- faced the same barriers that Stuart and John face today. Read below:
For nearly as long as we can remember, we each wanted to meet someone to fall in love with and start building a life together. For us, it happened in 1987, when we met at a neighborhood election party. When we met, John felt as if he had already known Stuart forever. To this day, when we visit old places from Stuart’s childhood, John feels like he was there with Stuart. And even before our second date, Stuart had already told his best friend from college, “I’ve met my future husband.”
When we married at San Francisco City Hall on February 12, 2004 after 17 years together as a loving and committed couple, we felt for the first time in our lives that our government was treating us as equal human beings. Subsequently, the court ruled that our marriage was null and void. Since then, we have been working to educate our fellow Californians about the importance of equal marriage rights.
This is not the first time our family had found itself in the center of a historic civil rights struggle for equal access to marriage. Stuart’s mother, who is Chinese American, and father, who is white, were only able to marry over 50 years ago, because the state’s ban on interracial marriage was overturned. Stuart’s mother remembers how one of her classmates at the University of California had to leave the state to marry her white fiancé before the law was changed.
After their wedding, Stuart’s parents traveled across America and lived in many different parts of the country. When they moved to Missouri, they were disturbed to learn their marriage was illegal and void in Missouri because that state still prohibited marriages between Chinese-Americans and whites.
But everywhere Stuart’s parents went, they educated people about interracial relationships by their very presence as a loving couple. We too have traveled across America as part of the coast-to-coast Marriage Equality Caravan to do the same — to show that our common humanity is the basis for marriage equality across the land.
Like our parents before us, we simply want the freedom to marry the person of our choice and to have the same rights, recognition, and responsibilities for our family that all other loving and committed couples enjoy. Today, all of our parents want nothing more than for their son and son-in-law’s marriage to be legally recognized, just as their other children’s marriages are.
I’m a tangible poster child for why DOMA should be repealed. If someone asks what’s unfair about our marriage not being recognized in all states, I can offer several examples, but here is the most glaring one: I’m dying. I have a terminal illness and I pretty much know my life span. My wife and I have been together since 1993, and we’re legally married in the state of California, yet the federal government does not recognize our marriage and the rights included therein.- Cathy, written testimony submitted before the Committee on the Judiciary, Respect for Marriage Act, July 20 2011.
Cathy is an activist dedicated to repealing DOMA and raising awareness about ALS.
Cathy and her wife have been together for twenty years. Cathy is dying from Lou Gehrig’s disease with a life expectancy of one to five years. Because the federal government does not recognize their marriage, Cathy’s wife will not receive her social security survivor benefits after she passes away. Instead, Cathy’s social security will go to the government. In her written testimony for the Committee on the Judiciary of the Respect for Marriage Act, Cathy explains how DOMA denies her family basic rights and stability that come with federal recognition of marriage. Cathy hopes to live long enough to see DOMA nullified.
In January 2009, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) a.k.a. Lou Gehrig’s disease. This is a progressive, fatal neuromuscular disease. Most people with ALS die 2 to 5 years after diagnosis….I have a powerful incentive to live long enough to see the federal government recognize our marriage. Without this recognition, my wife will not receive my social security benefits.
I met my wife in 1993 and we had our first unofficial wedding celebration on June 16, 2001. In February of 2004, we were one of thousands of couples who got married in San Francisco City Hall after Gavin Newsom honored our rights to marry. We had to travel three times to San Francisco in attempts get our marriage license because we weren’t allowed to schedule appointments as is done for heterosexuals. With thousands of other couples, we had to line up for blocks in rain, fog, cold, and wind for up to thirteen hours each trip. Our determination and steadfast love prevailed. The fourth time, we, like other couples, were allowed to schedule appointments and receive our marriage license. We exchanged vows immediately after in the glory of the S.F. City Hall rotunda. We framed our marriage license from the County of San Francisco, which the courts later nullified.
Again we did not give up. We were one of the 18,000 gay couples who did get married legally in California before California’s Proposition 8 put an end to gay marriages in the state. Our marriage is still considered valid in California, so we do have the same rights as any married couple in California.
However, when we step out of California, or deal with federal laws, we have none of those rights. This means if my wife and I travel out of state and my ALS requires a trip to the emergency room or a hospital stay, my wife could be denied the right to be with me at a time when I could be breathing my last breath.
When I die, [my wife] will not get my social security benefits. For heterosexual couples all over the country, when a person dies, their spouse gets their social security benefits. You get a monthly stipend because you’ve been paying into social security all your working life. You then draw off that money after you retire and if you die, it goes to your spouse or your dependent.
However, since the federal government does not recognize our marriage, [my wife] won’t get that. All the money I would have gotten to help support us if I were to grow older just goes back to the government. [My wife] can’t have it.
I contacted attorneys to see if there was anything I could do. They told me that, in the eyes of the federal government, I have no spouse. A few friends suggested that I legally adopt my wife, but the only way I could do that was if she were mentally incompetent. I don’t have any children so when I die my hard-earned money goes back into a government that doesn’t honor our legal California vows. Not only will my wife suffer [the loss of her] life companion, she will suffer financially.
Although some people consider social security benefits to be of minimal help, in this case it could mean the difference of my wife being able to pay her rent. We are not wealthy and, even though we are known regionally as “rock stars,” most of our years together we lived paycheck to paycheck. We did inherit some money after my brother Larry died of ALS, but most of this was spent on pre-paying my cremation, the death certificates, and taking care of other legal matters upon my death.
So once again I emphasize that with DOMA currently in place, the absence of social security benefits will burden [my wife] during her already stressful and sorrowful grief and mourning. Because her immediate and extended families shun her, they certainly will not be helping her emotionally or financially. As more of my family members die of ALS, my wife’s support system will continue to diminish.
We had a well-known duo, Duval Speck, a band, The Essentials, and produced three CDs. We performed all over California for LGBT rights and celebrations, ALS Benefits, and at “mainstream” public events. We never changed a word in any song, which made us vulnerable to “haters.” For example, if the lyrics were: “I fell in love with her, and knew she’d be my wife; I would comfort her for all of her life,” we’d never switch “her” to “him.”
In 2009, the first year and a half after I was diagnosed, we produced, directed and performed in many benefit concert fundraisers for ALS. Sadly, the ALS has now taken away my ability to sing, and my arms and hands hurt and are too weak to play percussion. On Sept 25, 2010 we put on a hugely successful concert for ALS. That was the last time either of us performed.
My wife, is also my caregiver. Doing her job, the tasks that I can’t do anymore, putting me to bed, cooking and monitoring how I eat, and making sure I can breathe, doesn’t leave much time for making music. If you have ever heard her play guitar and sing, you’d agree that she is uniquely wonderful. This is such a horrible loss for her and our friends and fans.
I have to sleep with special equipment to deliver oxygen now, and my energy continues to decline. My degree of fatigue determines what I can accomplish each day. Nothing, and if you could see my face right now, you’d know I mean nothing will dampen my spirit. And, I hold onto hope that if I live long enough, maybe the laws will change and the federal government will recognize our marriage. That keeps me getting out of bed in the morning, striving for LGBT equal rights, and continuing to raise funds to find a cause and cure for ALS.
.….if you want a real-life example of why DOMA is unjust, I’m right here–a 51-year-old woman dying from ALS (a disease our society tends to hide) and my wife, 53, with still plenty of life to live. I’m the “poster child” for “Repeal DOMA” and “Defeat ALS.” Some people in our great country don’t think we’re as good as they are, and don’t think we deserve the same rights. Well, we are as “good as they are” and we do deserve the same marriage rights. Go ahead and plaster my story on every wall and every screen.
I’m not dead yet. Even the terminally crippling disease of ALS won’t stop me as I strive to open hearts and eyes, so that all may live with love and equality.
The first time I had sex with another woman I had no idea what I was doing. As I started to take off her panties, she said down to me, “Gloves?”
