Tag Archives: medical industrial complex

Forced Intimacy: An Ableist Norm

Photo of my wheelchair in a dark room, silhouetted against a doorway, with a large shirt outlined in lights hanging against a dark wall.

“Forced Intimacy” is a term I have been using for years to refer to the common, daily experience of disabled people being expected to share personal parts of ourselves to survive in an ableist world. This often takes the form of being expected to share (very) personal information with able bodied people to get basic access, but it also includes forced physical intimacy, especially for those of us who need physical help that often requires touching of our bodies. Forced intimacy can also include the ways that disabled people have to build and sustain emotional intimacy and relationships with someone in order to get access—to get safe, appropriate and good access.

 

I have experienced forced intimacy my entire life as a disabled child, youth and adult. I am always expected to do the work of opening myself up for others’ benefit, education, curiosity or benevolent oppression.

 

Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order to get the basic access we need in order to survive. We are the ones who must be vulnerable—whether we want to or not—about ourselves, our bodyminds and our abilities. Forced intimacy was one of the many ways I learned that consent does not exist for my disabled asian girl bodymind. People are allowed to ask me intrusive questions about my body, make me “prove” my disability or expect me to share with them every aspect of my accessibility needs. I learned how to simultaneously shrink myself and nonconsensually open myself up as a disabled girl of color every damn day.

 

Forced intimacy is the opposite of access intimacy. It feels exploitative, exhausting and at times violating. Because I am physically disabled and use a manual wheelchair, I often experience forced intimacy when able bodied people push my wheelchair without my consent or when I am in situations where I have to be pushed by people I do not feel safe with, know or who are actively harassing me while pushing me. This often happens when I am traveling and have to rely on strangers for my access needs. I cannot count the number of times a strange man has pushed my wheelchair in the airport, while saying offensive and gross comments to me. These are the moments where disability, race, gender, immigration, class, age and sexuality collide together at once, indistinguishable from one another.

 

Another example of forced intimacy is when I am somewhere and need an arm to lean on while walking, as I often do, and I have to be physically close to and touch someone I do not want to. This happened much more when I was growing up as a disabled child and youth, before I had more say over my life and the people in it. Forced intimacy is also my entire experience in the medical industrial complex with doctors, nurses, brace makers, physical therapists and practitioners, none of which I ever consented to. It is also the many moments in my daily adult life when I have to share more information than needed to get access for events I would like to attend from folks, including “comrades,” who do not post any accessibility information on their event pages or flyers, but have an “accessibility needs” section on their Google forms. Tip: if you don’t provide any accessibility information about your event, then I cannot assess what my access needs will be. Am I supposed to list out every single access need I might ever possibly have, simply because of your ignorance?

 

Even in writing this essay, I am pushing back against the ableist notion that disabled people should just be grateful for whatever we get—whatever crumbs are thrown our way. Well, at least they even had an “accessibility needs” section on their form. And most importantly, I am pushing back against the forced intimacy and emotional labor I am supposed to constantly be engaged in so people won’t be “mad” at me, because as disabled people know all too well, able bodied people will not help you with your access unless they “like” you. This is a very real and dangerous caged reality that I and many other disabled people live in and it is one of the main reasons why forced intimacy exists.

 

Able bodied people treat access as a logistical interaction, rather than a human interaction. People I don’t know or who have never even had a conversation with me about disability casually expect to be my “access person,” without realizing that there is significant trust and competency that must be built. People assume that I will accept any access—again, any crumbs—thrown my way and of course that I should be ever-grateful for it. They don’t realize that consent exists on both ends. Sure, I know how to survive and get by with ableist access, that is a skill I will never lose as long as I am living in an ableist world; but I am also working for a world where disabled people get to be human and have consent over our bodies, minds and intimacy.

 

The contradiction of having to survive in the oppressive world you are trying to change is always complicated and dehumanizing.

 

One of the reasons that forced intimacy has been so prominent in my life is because there is an inherent intimacy to access—or at least, in my experience, to my access. When someone is helping me with access, I am vulnerable; I am interdependent with them, even if they don’t realize it. There is a magnificent vulnerability to access and to disability that is powerful and potentially transformative, if we would only tap into it. Sadly, in an ableist world, access and disability get stripped of their transformative powers and instead get distorted into “dependent,” “burden” and “tragic.” Forced intimacy is a byproduct of this and functions as a constant oppressive reminder of domination and control.

 

Though I have written here about forced intimacy as it relates to disability and access, it is in no way relegated only to ableism. I have experienced forced intimacy as it relates to other forms of oppression as well, and it manifests itself in all kinds of different ways. It has been a constant part of my life and my experience as a queer disabled korean transracial and transnational adoptee woman survivor. The forced intimacy of transracial and transnational adoption, for example, is a never-ending black hole for so many of us.

 

I cannot account here all of the many ways that forced intimacy has so fundamentally impacted and shaped me, that is for another piece of writing. I ache for the day when that will no longer be the case, especially for future generations of disabled children.

 

 

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Medical Industrial Complex Visual

The following is a visual* of the Medical Industrial Complex (MIC) and is offered as a tool for our work for collective liberation. It was created so people could begin to get a sense of what the MIC is and all it encompasses. I have found that many people understand the general concept of the MIC, but don’t always know what it actually is beyond hospitals. The MIC cuts across all of our work and continues to be a major site where ableism is manufactured, perpetuated and fed. Any of our work to challenge and transform the MIC and its influences must have a sharp analysis and history of ableism. For example, when fighting for healthcare, let us remember that we cannot simply fight for the right to receive care, but also the right to refuse care.

This is an evolving visual that will continue to be updated. At the bottom of this post, is a non-visual breakdown in outline form. This is not an exhaustive listing of every single part of the MIC, but rather an overview, offering examples of the many sites, sectors, professions, fields and institutions that make up the medical industrial complex. There are many more we could add. For example, there could be a whole other section dedicated to animals, especially the ones that are part of our food source, and all the genetic engineering, drugs, hormones, supplies and services that they receive. It is important to remember that the impacts of the MIC ripple out and are felt past what is listed here.

The Medical Industrial Complex is an enormous system with tentacles that reach beyond simply doctors, nurses, clinics, and hospitals. It is a system about profit, first and foremost, rather than “health,” wellbeing and care. Its roots run deep and its history and present are connected to everything including eugenics, capitalism, colonization, slavery, immigration, war, prisons, and reproductive oppression. It is not just a major piece of the history of ableism, but all systems of oppression.

Oppressed communities have had long and complicated histories with the MIC. From the continued targeting of disabled bodies as something to fix, to the experimentation on black bodies, to the pathologized treatment of and violent attempts to cure queer and trans communities. From the humiliating, lacking or flat-out denial of services to poor communities, to forced sterilization and dangerous contraceptives trafficked to young women of color. From the forced medicalization used in prisons today, to the days when the mental institutions used to be the jails, and the ways that “criminal” and “mentally disabled” are still used interchangeably. From the lack of culturally competent services, to the demonization and erasing of indigenous healing and practices. From the never-ending battle to control populations through controlling birth, birthing and those who give birth in this country, to the countless doctors and practitioners who have raped and sexually assaulted their patients and the survivors who never told a soul. From all the violence that was and is considered standard practice, to the gross abuses of power.

In flushing out what the MIC is, we are naming a system. We are calling attention to the systematic targeting of oppressed communities under the guise of care, health and safety. Like other oppressive systems, there are many individuals within the MIC that do good work. There are many people who went into the MIC intentionally to serve their communities because they want to change the system and provide reliable and safe care to those who need it. There are many people working inside the MIC who see first-hand its bureaucracy and hypocrisy. They help many of us find loopholes, shortcuts and life rafts through.

We are not saying that there are no useful or helpful things within the MIC. It has saved many of our lives or the lives of people we love. We are not anti healthcare or science, but are rather exposing the reality that many of us are dependent on the MIC while we are simultaneously trying to change it and ultimately build alternatives to it. Many of us don’t want to have to turn to the MIC, yet have few other viable options. And still many of us are fighting for access to current (or better) services within the MIC. There are no easy answers and the contradictions we are living in are often painful and unjust. Similar to our work to resist and challenge capitalism or to create alternatives to the police and prisons, resisting and challenging the MIC is rife with complexity and there is so much we need that we don’t have yet.

We are asking, why we have so few options when it comes to our healthcare needs? And why insurance and pharmaceutical companies get to call the shots on the kind of care we receive—or don’t? Why don’t we talk more about the ways that forced medicalization has become part of our prison system? Or how non-western and alternative healing practices are often no less ableist than western medical practices? We are asking, what could “health,” “wellness,” “care,” “accessibility” and “sustainability” look like in practice, outside of theory? We are revealing where and how the MIC is already in our lives in ways we might not have thought of before. We are urging us all to connect the MIC to our political work, because healing, wellness, care, “health” and disability are part of whatever liberatory work we are engaged in.

This offers us tremendous opportunities for coalition and cross-movement work because we all have a shared stake in our individual and collective wellness and healing. If anything, the damage the MIC has inflicted on our planet should be enough for us all to dream and invest in building alternatives. We have so much shared ground when it comes to being able to answer the ever-present question, “What could true wellness and care look like for our communities?

 

[The image shows a visual layout of the Medical Industrial Complex, which is written at the top in large letters. Just under it, there is a thin, long box that contains the words: Profit, Power, Control, Exploitation, Ableism, Oppression, Violence, Trauma. There are four main quadrants of many different small boxes with text in them, varying in sizes. Each quadrant is in a different color. The boxes are all connected to each other with bolded and thin lines, forming a web-like effect, filling the entire page. There are main categories and subcategories differentiated by bolded text. The boxes are organized according to the outline listed below. In the outer four corners are 4 large boxes with Bolded text. The top two on either side read “Science and Medicine” and “Health” and the bottom two on either side read, “Access” and “Safety.” In the middle of all the little boxes, in the middle of the visual are four large boxes that correspond to the 4 outer large boxes. The top two read, “Eugenics” and “Desirability” and the bottom two read, “Charity and Ableism” and “Population Control.” There are 4 large arrows behind the boxes that connect each outer corner large box to it respective middle large box. Science and Medicne is connected to Eugenics; Access is connected to Charity and Ableism; Safety is connected to Population Control; and Health is connected to Desirability. In the bottom right corner there is small grey lettering that reads, “Posted on leavingevidence.wordpress.com Version: 2015.1]

[The image shows a visual layout of the Medical Industrial Complex, which is written at the top in large letters. Just under it, there is a thin, long box that contains the words: Profit, Power, Control, Exploitation, Ableism, Oppression, Violence, Trauma. There are four main quadrants of many different small boxes with text in them, varying in sizes. Each quadrant is in a different color. The boxes are all connected to each other with bolded and thin lines, forming a web-like effect, filling the entire page. There are main categories and subcategories differentiated by bolded text. The boxes are organized according to the outline listed below. In the outer four corners are 4 large boxes with bolded text. The top two on either side read “Science and Medicine” and “Health” and the bottom two on either side read, “Access” and “Safety.” In the middle of all the little boxes, in the middle of the visual are four large boxes that correspond to the 4 outer large boxes. The top two read, “Eugenics” and “Desirability” and the bottom two read, “Charity and Ableism” and “Population Control.” There are 4 large arrows behind the boxes that connect each outer corner large box to its respective middle large box. Science and Medicine is connected to Eugenics; Access is connected to Charity and Ableism; Safety is connected to Population Control; and Health is connected to Desirability. In the bottom right corner there is small grey lettering that reads, “Posted on leavingevidence.wordpress.com Version: 2015.1]

MIC Visual Version 2015.1 Fullscreen & Download

 

In this visual, there are 4 distinct sections that make up the underlying core motivations of the MIC: Eugenics, Charity and Ableism, Population Control and Desirability. These are part of what allow the MIC to continue to be profitable. Not only do they anchor each of the 4 sections shown here, but they permeate through the entire MIC. For example, Eugenics anchors Science and Medicine, but is absolutely a part of how we have been taught to understand Safety and is a cornerstone of Population Control. Desirability anchors Health , which includes everything from the Alternative and Natural Medicines Industry to Cosmetic Medical Procedures. Charity and Ableism anchor Access and reminds us how access is still understood as charity, rather than justice. Population Control is often done in the name of Safety, but is most certainly a part of Science and Medicine as well.

Since nothing listed is mutually exclusive and many of these boxes overlap, there are connections that can be made throughout the entire visual. For example, the Mental Health Industry boxes are intentionally positioned to slide right down into the Prison Industrial Complex, especially given that the largest mental institution in the U.S. is part of a county jail in LA. The same is true for the placement of Bio-colonialism and Cosmetic Medical Procedures since they both so aptly reflect the motivations of Eugenics and Desirability, respectively. Non-profits were included directly next to Charity and Eugenics because of the ways that they have helped to framed how we understand things such as “cure” and “rescue,” and dutifully fundraised millions of dollars in the process.

What would it mean to not have to be afraid of going to the doctor? To be able to trust that the care and treatments you are receiving will not only take care of your body, but the planet and future generations as well?

I am inspired by the possibilities that can be grown out of the rich fertile ground where disability justice and healing justice meet and overlap. I ache for more healers that don’t continue to perpetuate ableist notions of how bodies should be (or strive to be) and for disabled folks who don’t have to only know “healing” as a violent word because of our histories of forced healing, cures and fixing. I get excited about practitioners who have accessible spaces and practices that can hold all kinds of bodies and minds; and collective access and care that allows more and more disabled people to be less and less bound to the state.

I hope this visual continues to evolve and serves as a useful tool for different kinds of liberatory work and I look forward to creating more versions. I hope this is the beginning of all kinds of different tools (i.e. more visuals, writings, breakdowns, art and education) for understanding the MIC because there is so much work to be done.

 

*There are many important people who helped create this visual from its inception 6 years ago, to the huge mass of colorful webs it is today. The original version of this visual was created in collaboration with Cara Page and Patty Berne for the January 2009 workshop, “Re-envisioning the Revolutionary Body: Disability, Race, Queerness and the Possibility of Cross-movement Building.” Deep thanks go to both of them for their ongoing work for healing justice and disability justice.

Over the last 6 years, I continued to rework the visual by adding more information, re-organizing the layout, and re-formatting it. I played around with many different breakdowns before finally settling on this 4-part framework of Eugenics, Charity and Ableism, Population Control, and Desirability. I asked for (and got) a ton of feedback on it from great individuals across the U.S. and Canada who attended workshops and talks I gave. Friends and comrades also gave feedback and much needed support on formatting, arranging and content.

I would especially like to thank two fellow disability justice activists who have been pivotal in thinking through the content of the MIC with me in the last 3 years. This visual would not exist as it is today without them and they have given so much of their time and heart to both the larger framing, as well as the minutia. They have asked to remain anonymous, due to safety concerns of being public about their disabilities, so I will just say, “thank you, thank you, thank you.”

 

The Medical Industrial Complex Visual Outline

  • Profit, Power, Control, Exploitation, Ableism, Oppression, Violence, Trauma
  • Science and Medicine  —  Eugenics
    • State/Private Hospitals, Clinics, Health Centers
      • Medical Practices, Examinations, Surgeries, Procedures, Equipment, Suppliers
    • Medical Schools
      • Medical Curriculum, Studies, Research, Experimentation
      • Doctors, Nurses, Practitioners
    • Pharmaceutical Companies
      • Multi-National Corporations, Distributors
    • Bio-colonialism
      • Scientists, Researchers, Genetic Testing, Vaccines
      • Reproductive Control, Sterilization, Contraceptives
      • Assisted Reproductive Biogenetic Technologies
  • Access  —  Charity and Ableism
    • Assistive Devices, Equipment and Services
      • Prosthetics, Braces
      • Wheelchairs, Canes, Walkers, Ventilators, Vans, Lifts, Needles
      • Physical Therapy
    • Non-Profits
      • Service Provision
      • Advocacy, Fundraising
    • State Disability Services and Programs
      • Department of Mental Health, Case Workers, “Doctor’s Note”
      • State Provided Care (Nurses, Personal Attendants)
      • Federal, Regional, State, County, City
  • Safety — Population Control
    • Prison Industrial Complex
      • Prison Psychiatric Wards, Forced Medicalization and Institutionalization
      • Healthcare Provision and Facilities for Prisoners
      • Lethal Injections
    • Drug and Addiction Facilities and Programs
      • Drug testing
    • Assisted Living
      • Group Homes, Nursing Homes
      • Elderly, Sick and Disabled
  • Health —  Desirability
    • Mental Health Industry
      • Public/Private Institutions and Services
      • Therapy, Psychology
      • Psychiatry
    • Non-western and Alternative Healing
      • Schools, Research, Practices, Beliefs
      • Practitioners, Leaders
      • Faith-based and Forced Healing
    • Alternative and Natural Medicines Industry
      • Multinational Corporations, Distributors
    • Cosmetic Medical Procedures
      • Surgeries, Supplies, Drugs

 

 

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On Claiming My Movement: Disability and Reproductive Justice

(*From PEP’s Winter 2008 Newsletter)

black and white picture of the veins of a leaf.It is not a coincidence that I ended up working in a movement that is fundamentally rooted in the idea that certain bodies are valuable and others are not; in a movement that is so connected with the world of healthcare and medicine–the reproductive justice movement.  Reproductive justice and disability are connected on a deeply fundamental level.  Disabled people, issues, history, politics and analysis allow us to see parts of reproductive justice that we would otherwise never know.  After all, how can you talk about bodies without talking about disability?  How can you ignore the fact that disabled women are forcibly sterilized or given dangerous contraceptives to control their menstrual cycles for the convenience of their caretakers and institutions?  How can we learn to fight for not only the right to receive care, but also the right to refuse it?  How can we forget that female bodies were historically coded as “disabled” because they were “different” and had “different abilities” than male bodies?  Or that ableism is so easily and successfully used as a mechanism of reproductive oppression?

As women of color, people with disabilities, LGBTI and queer people, and survivors of violence and trauma, the struggle to claim our bodies for ourselves–in all of our bodies’ curious, strange, beautiful and glorious ways–cannot be separated from reproductive justice.  As communities whose bodies have been owned, experimented on, institutionalized, hospitalized, medicalized, colonized, imprisoned, enslaved and controlled, we have been told that our bodies are wrong, perverse, shameful, bad, and most importantly; that our bodies are not ours; that they belong to the state, our parents, husbands, partners, doctors, children, families, communities, god(s), and so on.

I grew out of a very strong feminist, activist, close-knit community working to end violence against women and children.  Early on, I learned about sexism, racism, economic injustice and homophobia; that there was no hierarchy of oppression; that systems of oppression were connected to each other, intersected and overlapped.  Despite such a strong framework, no one ever taught me to think of disability in the same way and connect it to being Asian American, a woman, young or queer.  No one ever taught me that being disabled was a powerful way to move through the world or that disabled communities had rich and vibrant cultures of their own.

I was taught to claim my body as a girl, female, and woman, but not as a disabled person.  When it came to my disability, my parents looked to doctors, healthcare providers, medical experts and brace makers.  I was not the expert on my body; they were.  It never occurred to anyone that the ability to claim my body as a girl was dependent on my ability to claim my disabled body as a disabled girl.  No one ever realized that my experiences with the medical industrial complex as a disabled child would ultimately discourage me from seeking medical services (reproductive or not) in the future – or that standing in my underwear in front of male doctors as they studied me was any different than standing in my underwear in front of any old men as they studied me.

Growing up disabled, my body profoundly affected how I viewed the world and in turn, how the world viewed me.  School became a site where the politics of beauty, disability, race, sexuality and gender collided.  I never saw disabled women (let alone disabled women of color) in powerful roles, being desired or desiring, raising families or claiming their disability as a political identity, rather than an individual flaw or tragedy.

One of my earliest memories of consciously claiming my body for myself was deciding not to wear my brace any more.  For years I wore a brace on my right leg; I had to get them re-made or re-fitted almost every year as I grew out of them.  I had some that went from my foot to my knee and some that went all the way up to my hip.

For a long time I did not question my brace.  It was just the way things were, like stairs, people staring at me when I walked, or feeling ashamed of my disability.  Among many things, my braces were hot (often made of plastic and or fiberglass), and  in the Virgin Islands Caribbean weather, they itched, pinched my skin, and gave me painful blisters which I would try to prevent by wearing more socks or padding.  Like my parents, I had come to believe that I “needed” to wear my brace.  But something began to change as I entered middle school. I began to ask questions: why should I have to wear something so painful everyday that is supposed to “help” me?  If they can send a man to the moon, then surely they can make a comfortable and useful brace for my leg?  In the beginning I had small acts of resistance: the daily morning fight about putting my brace on or bringing a change of shoes and changing out of it once I was at school–this went on for years.  Finally I was “allowed” to not wear my brace some days, and it was not until I was in college that I was able to choose not to wear my brace everyday.

For me, my brace represented the medical establishment’s grubby little hands on my body, forcing me to adhere to a standardized, able bodied norm of how bodies are supposed to be, look, act and move.  When I wore it, I could hear horrible brace maker’s voices in my head, “that’s an ugly walk,” “walk down the hallway again and this time, try and make it prettier,” “this brace will make you have a normal walk,” or “don’t worry, you’ll be able to hide the brace under your clothes–boys won’t even know it’s there.”  It represented years of someone else deciding what was best for my body and the invasion (physical and mental) of my body at a young age by people who never asked me what I thought about having multiple surgeries done at the same time; how I felt being told that my body was “wrong” and “something to fix” over and over again. All that time, I never knew that there was a whole movement out there of disabled people demanding justice and a right to our existence.

The ownership and entitlement of the medical industrial complex of my disabled body is, in my mind, no worse than the ownership and entitlement of the system of white supremacy of my body of color; or the system of male supremacy of my female body.  In fact, they are so connected and mutually interdependent that they are impossible to separate.  Claiming my body has been and continues to be a pivotal process in my own life.  Knowing and learning to understand my disabled body as powerful, beautiful, valuable and desirable has been central to my activism in the reproductive justice movement.  For me, reproductive justice will always include a radical analysis of disability and ableist supremacy because they are part of each other and they are a part of me.

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