Monthly Archives: January 2013

In the Shadow of Illness

I don’t remember ever being told my father was dying. I must have been too young when I internalized this information. I think I always knew he was sick, and since my dad was an AIDS educator, it wasn’t like I didn’t know what the disease did.

It was the 1990s. We were only beginning to knew what AIDS was, and at 8 years old, I only understood what it had done to my father.

My memories of these days are so scattered, and I try to pick up the pieces, scrambling them together like a puzzle made of my own sadness.

I’m still missing some of the pieces – and as an adult I am discovering that the process of getting to know my father nearly twenty years after his death is something I am going to have to fight through. I have letters, written to him, and written from him to others. I have his artwork. I have his writing. I have the play he wrote about his disease.

But I will never remember what he smells like. How do I grab hold of his smell, or his tone when he was happy? The question I begin to ask myself is not “who was he?”, but sometimes “Who am I?” in the context of my lineage.

People tell me I look like him. I have been told that I dance like him once or twice. But I cannot draw like my father, and our writing styles are vastly different. Where does the person I have become line up with the person that he is, and how do I integrate these things into a whole?

When all you have is fragments, where do you begin?

The discovery of who my father was is slow.

Whether or not we realize it, our parents are integrated into our identities at early stages in our development. But there was no father to take with me to the father daughter picnic for father’s day, and I remember having to explain myself whenever a classmate at a new school would ask why I wasn’t making my dad a card.

As adults, we’re expected pretty frequently to identify with our families – especially in highly socialized rituals like weddings. When I got married last year, strangers would ask, “is your father going to walk you down the aisle?” or say, “Oh, your father is just going to love lifting this veil off your face!”

I’ve never been a Daddy’s Girl. I don’t even know what that means. I do know that I spend a lot of time trying to figure out how to acknowledge and remember a person who I don’t really know. This year I’m forming an NYC AIDS Walk group in his memory – to walk in his honor and raise funds to fight the disease which killed him. But I don’t want to know my father through his disease. I don’t want to have him be just an illness. I want him to be my parent.

The problem is that even when I ask the people who knew him best about his life, they can’t tell me about the relationship we might have had because none of them are his child. These splinters of memory – reading books about hippos, playing rocketship/astronaut games before going to sleep (and sharing my bed with him when I stayed the night), having my art hanging on the wall – a child’s sketches, next to his artwork during a showing— reading his dedication to me in the play he wrote. These are the things I can cling to.

But they’ll never be enough.

I don’t know if this is what it’s like for everyone when they lose a parent – but I know that I still grieve 20 years later, in part not because I miss him, but because I miss what he could have been in my life. I miss the may-have-been moments.

As a child I remember that I clung to the idea of his physical remains – his ashes, because they were the only reminder I had that he had been there at all. I sometimes envy the people who have gravesites to visit, because at least then there is an acknowledgement outside of their memories – a physical space to occupy when you wish to remember. I don’t have a gravesite, but I do have physical touchstones. As a historian, I suppose it does help me to have these artifacts of his life. I own his archive.

I didn’t know, for example, that my father could read German until I found letter written to him exclusively in German. I didn’t know that his artwork wasn’t always abstract, and that the things I love in art are influenced by the work he did when I was around him. I don’t know how I’m like him, but I want to know. I remember going with him to teach AIDS education classes to adults – I have letters thanking him for his teaching, and these are the things I choose to carry with me. I haven’t done the work in a long time, but I think it may be a way to connect with him – something which I did with him before that I can carry on as an adult. The disease is so different now, but the reality remains the same.

It happened to me, it has happened to others: their parents die from AIDS, but instead of everyone understanding it like they would cancer or another terminal illness, the sideways glances of misunderstanding cloud their faces. The politics of sex education and gay rights muddle the story of my past, and I am forced to politicize the very nature of my identity. The teddy bear gay pin sits in my jewelry box. The ACT UP pin sits next to it. The photos of drag queens and letters from family sit in my office, and I need to find a way to synthesize the historical image of my father with the reality. I need to understand where I came from without forgetting what I already know.

He was Tanya Ransom, a drag queen. He was Michael, an artist, educator and playwright. And he was a patient. And he was my father.

N.B.: If you would like to donate or walk in the AIDS Walk Team I have begun, it is team 4884!

Artwork by Michael "hiv" Norman and Elsa Sjunneson

Artwork by Michael “hiv” Norman and Elsa Sjunneson

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Cooking While Blind – Adventures In Not Burning Myself Or Others

I wrote a post about cooking while visually impaired – it is up over at Offbeat Home!

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January 31, 2013 · 11:30 am

Has Everyone Lost Their Goddamn Minds?

The Anniversary of Roe v. Wade was this week, and with it my attention turns to the legal issues surrounding the fetus. Except that I’m not doing that in the traditional sense this week, I’m doing it in extra special roundabout ways where I feel that my head is turning like the little kid in the Exorcist.

In New Mexico, a bill is pending which would prevent rape victims from getting abortions, otherwise they’ll face jail time for tampering with evidence.

A rape victim should not be forced to carry a pregnancy to term because the law thinks it will break the chain of custody in evidence. Rules of Evidence should not apply to the womb.

Tampering with evidence shall include procuring or facilitating an abortion, or compelling or coercing another to obtain an abortion, of a fetus that is the result of criminal sexual penetration or incest with the intent to destroy evidence of the crime. (Thinkprogress.)

Oh, and did I mention this would carry a 3 year sentence in prison? This would be a felony? Why can’t they simply compel that DNA evidence be taken from every abortion procedure when related to a rape? Isn’t that a better solution – a more humane solution than to compel a woman to remain pregnant after a sexual assault. And how exactly is the pregnancy evidence? Are they going to demand paternity tests on the rapist suspects? Are women going to be forced to have procedures done to prove who the father is? And once it’s done, why would they want to know? I would hope that the state would assist women in adoption procedures if they so wished, but I do not hold high hopes.

It would seem that the conservative end of these debates feels that a fetus is alive only when politically convenient, it would seem that when a woman should carry a pregnancy to term it is only when it is the least reasonable for the woman, and the most “useful” to the state. Does this mean that because she’s pregnant, you’ll believe she was raped? Are we really going back to the “well, women’s bodies know how to shut that sort of thing down” argument, from Fall of 2012? Are we really this incomprehensibly unkind to women in this country? And if we are, how do we stop it?

There is an implicit expectation of privacy built into the Constitution in many places. This right to privacy can be found through the 4th Amendment in our protections against an unreasonable search and seizure. How is this bill in New Mexico NOT a violation of those expectations? This law places pregnancy into the public sphere in a way that no other law would, especially given right to privacy afforded within Roe. We cannot allow women to be placed so publicly into the sphere of debate when they are experiencing what many consider the worst possible act of violence which can happen to a woman. We simply cannot remove these rights of privacy under the guise of “saving evidence”. It is a direct violation of the 4th amendment because this fetus is being unreasonably seized by law enforcement, the government.

Tomorrow in WTF Roe v. Wade Is On The Books Week: Catholic Health Services in Colorado denies that a fetus is a person.

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Filed under Feminism, Sexuality, War On Women

A Giant Step for Women in the Military

The United States Military is placing more faith in their female soldiers today, and allowing them to enter combat positions. A step for equality, yes. While my anti-war sentiments may be in place, I still recognize that this is an important step for women who want to serve their country fully and equally as soldiers.

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January 23, 2013 · 3:26 pm

Thoughts on Physician Assisted Suicide


They were twins. Both deaf, both cobblers. They never married, were very close to their families, and they spent their days together. They suffered from other medical conditions such as spinal issues, but the full roster of their illnesses is unknown to me. On December 14th 2012 they chose to use the right of Belgian citizens to voluntarily euthanize themselves. They did this because they were going blind as a result of glaucoma, and they could not bear the idea of being unable to see one another, or the idea of being institutionalized.

I am a supporter of right to dignity in death measures in the law; I believe that when people are suffering, when they are in pain, that they should be able to die rather than to suffer if they will not get better. To spare their families the pain of having to witness their death.

But I can’t get past the uncomfortable feeling that these men were choosing death over life. A life that might not be entirely unlike mine. Certainly the idea of being blind and deaf terrifies most people – but I am both. Neither are complete conditions for me, but I can’t shake the the fact that I am reading about someone deciding to kill themselves because they are like me. The story challenges my ability to be fully on the side of allowing people to use the medical establishment to help people die.

In Belgium the law reads as follows:

To make a legitimate euthanasia request, the patient must be an adult, must be conscious and legally competent at the moment of making the request, and must be in a condition of constant and unbearable physical or psychological suffering resulting from a serious and incurable disorder caused by illness or accident, for which medical treatment is futile and there is no possibility of improvement.

The physician decides whether the disorder is incurable based on the actual state of medicine, and the patient alone determines whether suffering is constant and unbearable. The physician must have several conversations with the patient in which he ascertains whether the patient experiences his/her suffering as constant and unbearable.

The physician must inform the patient about their medical condition, prospects, and possible alternative treatments, including palliative care. He must consult another independent physician about the serious and incurable character of the condition. This physician does not need to be a palliative care specialist.

Taking voluntary euthanasia seems to me a little premature in this situation. Certainly it is tragic to not be able to see ones brother – the twins had lived together their whole lives, never having married. Not knowing the twins personally, I cannot speak to their quality of life, but for some reason I can’t help but feel that their life experiences may have contributed to their inability to conceive of a world where they could not see, and where they could not live without some help.  I feel like the more people with disabilities are encouraged to experience the world,  the world seems less bleak. I know that traveling has made me more confident about my ability to engage with the world, not less.

The first doctor who was approached to euthanize the twins refused them, stating: “There is a law but that is clearly open to various interpretations. If any blind or deaf {people} are allowed to euthanize, we are far from home. I do not think this was what the legislation meant by ‘unbearable suffering’.

It seems that the twins had more medical issues than simply the glaucoma, but I can’t deny that the idea of helping people commit suicide just because they are going blind or deaf is discouraging. There are so many people who tell me that they would just die if they couldn’t see – like I can’t. So many people who have said that they would rather kill themselves than not be able to hear.

We live in a world of possibilities, one where adaptive devices, medical changes, and opportunities to live normal lives are cropping up every day. The surgery I had at 6 months old  to give me the sight in one eye has improved vastly. I’ve met people who have had cataract surgery in the last year who see better than they did before the surgery. We can’t simply give up because we’re scared.

Since I was not in the situation myself, I can’t say if this was right or wrong, but I can say that it shook me very deeply, and made me question a lot of things about the way I live. 
I can’t help but be uncomfortable with this choice, but I can educate myself about the choice they made. There’s no changing their decision, but hopefully we all can strive toward making the options for people facing deafness and blindness less bleak, and more hopeful. I hope that if I do go completely blind, or completely deaf, or both that there will be options which do not include suicide. Because I don’t want to give up.

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The DSM is a Medical Text, Not a Plot Generator

I am tired of feeling like every time I see a mental illness article, I need to shield myself from the comments.

I am sick with fear every time I hear “mental health registry”.

I am undone by the lies media tells in their plotlines, using PTSD, schizophrenia, anxiety, depression, and therapy as plot points, punch lines and things people get over.

We can medicate, we can use therapists and we can find pieces of truth which comfort us in the darkness of our own existences – but this is something we all live with. Obsessive Compulsive Disorder is not a repetitive joke, it is not the thing which makes a private detective funny. PTSD is not the thing which makes Charlotte King angry and mean, anxiety is not merely fixed with a pill, and therapy should not be the joke of a 30 minute sitcom.

When do we stop using mental illness as a punching bag and start considering ways to help people who live with it?

It seems as though those with mental illnesses are cast into four categories in media: Out of Their Heads Crazy Violent, Nonsensical Crazy,  Functional But Silly Crazy, and Angry Crazy. These all have varying levels. For example, a savant might be in either the functional or in the nonsensical category, whereas often people with PTSD are only cast as angry crazy. schizophrenics are cast as out of their heads and violent. Always, or at least that’s how it feels.

These depictions are wrong.

Mental illnesses are diagnostic tools. They are not all the same.

My experience with PTSD is very different from someone elses’ and my triggers will be different. The way that I express my feelings about the diagnosis which I hold – very different from someone else.

The solutions are different too. For someone who is violent, perhaps medication and time in a hospital setting may help. For that matter, people who have mental health issues which impact their whole lives may need to be hospitalized just so they can get a grip on their own lives – hospitals are not places for just the violent. They are places where people can learn skills they need out in a world which is often harsh on those whose realities are different from the general populations. For someone with PTSD it may be a place to regain control of an episode, and to remember where they are in time.

We don’t need television shows to continue getting it wrong, to keep telling the stories of the mentally ill for us – and telling them badly. We don’t need to have the general public hear stories time after time that PTSD only affects people in the military. We don’t need to have the myths of OCD as funny fill the gaps in where knowledge should be. We should be learning about one another by asking questions, by listening, and by thinking harder than the TV set will encourage us to.

The fact is, mental illness isn’t just about being quirky or different. It is what makes us people. For some of those people, it makes them artists. It makes them see the world in different ways.

I have an ability to understand sorrow, and past pain in a way that some don’t. I have friends whose schizophrenia makes them better writers. Photographers whose stories tell tales of depression – and we wouldn’t know what that looked like were it not for them. Beethoven would not have been the artist he was without his madness and his deafness. Emily Dickinson would not have been the poet we love were it not for her profound agoraphobia. Sometimes these differences are what make us beautiful, and we can’t forget that even though we fear each other.

Perspective is everything – and we cannot forget the beauty inherent in a world of difference.

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Filed under Disability Issues, Language

PTSD in the Age of Social Media

I opened my regular news reading to find photos of yet another rape victim. Yet another violation of a woman’s rights. In full color. The imagery stark against my retina.

I wonder sometimes if the reason why I cannot get the images of my own trauma out of my head is because every day I have to relive something of someone else’s sorrows. Media is spectacularly exploitative. Of course media is. Journalism is about telling other people’s stories, and because of it there is a trend towards exposing the most painful parts of a story without protecting the reader from their own pain.

This is part of why I strongly believe in trigger warnings. Do they seem stupid sometimes? Do we need to make sure we don’t overuse them? Oh, absolutely. If I didn’t read the articles labeled trigger warning half the time I’d miss out on valuable dialogue. But we need to be cautious with our readers. We need to be kind and thoughtful.

The images of gang rape coming out of India will not leave my head easily. The images of the girl in Steubenville, or the eleven-year old in Texas will not escape my dreams.

I wonder if the reason why so many survivors of assault, of rape, of abuse have not been able to heal properly because they are consistently given images to resurrect their own personal nightmares.

I cannot offer any solutions, because I cannot tell the editors of the world that showing us these photos makes our personal experiences sing louder than the present. I cannot deny that some days, all I want to do is throw in the towel and discontinue my fight, knowing that there will be days where the hurt is louder than the sound of my own voice stemming the tide against violence.

Can we heal when we know that the violence continues outside our own safety nets?

I know I can. But sometimes I cannot know it loudly enough.

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