Offering Hope and Help to the Victims of ARD Worldwide



      • On Being a Ghost:  The Powerlessness of Invisibility and Necessary Social Change

      • (ie, when you don't "look" disabled)

On Being a Ghost: 
The Powerlessness of Invisibility and Necessary Social Change
(ie, when you don't "look" disabled)

Jen Robinsonn 

Small Preface: Bear in mind here that phrase about the necessity of criticizing what you love, as that's what much of this essay does. I am not trying disparage social movements which I definitely believe in and am a part of myself, but rather to point out some problems that exist.
You have probably felt invisible at some point. Maybe as a woman, as a woman of color, as a lesbian, TG, or bisexual woman, or a large-sized woman, as a part of any other marginalized group, in a racist, homophobic, patriarchal society where so many of us are shoved off so far into the sidelines that sometimes we are no longer visible. Perhaps you have felt the invisibility of the reality of your life being disbelieved, as often happens with survivors of childhood abuse and rape. Perhaps you have felt the invisibility of people with low incomes in a capitalist nation. I have felt invisible too, and for some of those same reasons. Although, I have also felt another form of invisibility, that of being a women with a disability, and particularly an invisible disability. 

"Invisible disability" is a term used most often in reference to diseases that make people sick to the point of being disabled, yet, often, we do not necessarily "look" sick. Many of these illnesses occur primarily in women. Being a woman, a survivor of violence, having a low income, having been homeless for a time, and also being disabled by an invisible illness, I have often found myself feeling quite like a ghost. My dream is of haunting the society that would treat me as a ghost until it wakes up and notices that I am a human being who has value and rights, not just for myself but for all the women like me who have also felt invisible.

Examples of Invisibility:

Recently my friend Lauren, who also has an invisible illness, reminded me of something I told her years ago in email, "Never give anyone the luxury of redefining the reality of your life for you." 
The basis of my beliefs that I am the person who actually knows the reality of my own life, and that the personal is political comes from feminists. June Jordan wrote in, "Poem About My Rights", one of the most empowering pieces of writing I have ever seen, "I am not wrong: Wrong is not my name/ My name is my own my own my own". In another poem I love, "On Stripping Bark from Myself", Alice Walker described her "own small person, a standing self against the world,". Countless other poems, articles, books, and even web sites have taught me that I have a right to stake a claim on this planet where I was born, to define my own life, and to use my voice. When you are a person who is, in many ways, invisible to the world, such a foundation can be vital, and I wrap myself in a blanket of these words in order to survive sometimes. 

Yet there is a paradox here. While a woman's right to a room of her own is as important to me as it is to any other feminist who loves women's literature, I have spent years of my life stuck in rooms which I could not get out of. My rooms, actually, never were my own until I got disability benefits; they were the rooms of other people's homes, sometimes the homes of abusive family members, and, for one short period, a room in a homeless shelter. Inside these rooms I have not been writing great literature like Virginia Woolf.  I have been primarily in bed, staring at blank walls, too ill to get up, sometimes too ill to sit up, sometimes unable to concentrate well enough to read or do anything. The only communication I have with the outside the world is often solely through the Internet because I am too ill to go anywhere. Such isolation obviously makes me invisible in the most literal sense to most of society.

Then, during the times when I am out in society, I am still invisible. When I meet people on a good day, during which I am able to get dressed and go somewhere, I do not "look sick". I have often wondered what exactly people mean by that comment which I, and every woman I know with an invisible illness has heard so many times: "You don't look sick". How does one "look sick"? Are we to be on our beds having them pushed down sidewalks to show the world how sick we look on all the other days, when we cannot go out? Shall I carry my clear plastic container full of prescription bottles and supplements with me everywhere I go in order to "look" sick? Shall I pretend to faint for you?

I often fall down, due to my blood pressure dropping close to the point where a person passes out. When this happens, I do, evidently, "look" sick, and suddenly I find myself receiving all sorts of attention. Falling to the floor in a store or the library suddenly causes people to believe I am quite ill and they usually believe they need to call an ambulance. "This is nothing new," I tell them, "it happens all the time." 

When you do not "look sick" or look like the stereotypical disabled person because you are not in a wheelchair as society seems to expect all disabled people to be, you are, by default, assumed to be well. Then when someone asks what you do for a living (as this is usually one of the first questions Americans ask when they meet other people), and you reply that you are disabled, you get that familiar look that I have learned to spot from ten miles away. They are confused, or obviously believe I am lying. Sometimes they assume I am just depressed. Often, they assume I am merely lazy, and for some reason do not want to work. Sometimes people tell me this with words; other times their eyes and furrowed brow say it. I got tired, years ago, of explaining, justifying, and defending my reality for people who choose not to believe it could possibly be true, based on the fact that they happen to be privileged with good health and fully functional bodies. 

The denial that I am quite debilitated, but do not always look like I am, by illnesses you have likely never heard of, allows all of you who are not disabled by a chronic illness to believe you never will be. I am here to tell you that you might be, and fear is sometimes part of life. I refuse to justify anymore, for anyone, the facts of my disability because, as I have said before about my abuse history, it is my life. I live it every day. You telling me you do not believe in my life is you telling me I do not exist. You cannot see me; I am invisible to you. Meanwhile, I'd just like to let you know I am still living this same life. This would be a much easier life if your assumptions were actually correct. They are incorrect.

Invisible in the Disability Rights Movement:

In the most ironic of places, I find myself invisible too.  In the disability rights movement, which often focuses primarily on accessibility issues, little mention do I hear of people with chronic illnesses that make us weak, faint, and dizzy to the point that they cannot use a wheelchair in the first place or work at all. Meanwhile millions of women are disabled by chronic illnesses which may not make us look like the stereotypical image of a disabled person that is still prevalent in society, despite that fact that we are often incredibly debilitated.

When sending a message out about the group Sick Chicks and Twisted Sisters; I was questioned by some women on a large email list for women with disabilities as to why the word "sick" was in the title. I did not name the group SCATS; my friend who created it did, but I did name an email list I ran "Sick with a Voice". I replied to these women that the word sick was used by me because I am sick. It was quite surprising, and still is, to me, to find out that women in disability advocacy groups would actually take offense to a person who is disabled by a chronic disease claiming to be disabled. I am definitely disabled. I cannot work, and cannot go to school. Every college I have attended has considered me disabled, my doctor considers me disabled, the United States federal government - possibly the most difficult entity I know of to prove disability to - considers 
me disabled. Not to mention every day of my life tells the story of a woman who is disabled. That other women with disabilities would resent me for claiming a word that defines the reality of my life is something I will not ever understand. 

Frankly, what this reminds me of is my readings of African American women who were light-skinned being ostracized by those with darker skin. No, I do not own a wheelchair. Does that mean I am less disabled than a person who does? Even if we are to get so ridiculous as to quantify disability, why would people assume that the reason someone who is ill does not use a wheelchair is simply that she does not need such assistance?

I will tell you why I do not usually use a wheelchair. I have no one to push me in a wheelchair, nor do I have the money to hire such a person. I also do not drive or own a vehicle which might cart my wheelchair and me around. And, on most days, my illness is too disabling for me to sit up in a wheelchair or any other kind of chair for any length of time, so a wheelchair would not make me more mobile. Having to justify to other disabled women that I am actually disabled like them, is an example of the most ludicrous form of invisibility I have experienced.

Invisible in Social Justice Discussions:

Disabled women who are poor and need government benefits to survive are invisible whenever the term "welfare mother" is used to define everyone who uses food stamps, and Medicaid. In discussions of so-called welfare reform, of non-existent Medicare drug coverage, of so-called healthcare reform, little do I hear about the permanently disabled people such as myself who rely, and may rely for the rest of our lives, on these benefits in order to survive. Social Security Disability benefits provide those of us who need them to survive, and actually do get them, with an income that is below the poverty line in the United States.  For those of us permanently disabled (and you have to be "permanently disabled" to get disability benefits in the first place) , this means we will be living below the poverty line for the rest of our lives, and there is nothing we can do about that fact; unlike people who may, at some point, be able to get out of poverty, we will not be able to.

Disability is by definition a class issue.  Poverty is a fact of life for most disabled people. As a woman, then, someone like myself is faced with sexism, classism, and discrimination against disabled people in general and against people whose disabilities are "invisible" particularly, and some of us are also rape and sexual abuse survivors. 

Invisible in Feminism:

The state of powerlessness that results from these multiple forms of oppression is a phenomenon I find widely ignored in most of the women's studies and feminist literature I have read. Women's studies books sometimes describe "triple oppression". I remember looking through textbooks and writing in the margin, next to descriptions of the triple oppression caused by racism and classism combined with sexism, what about disability? Where is the mention of that added oppression, which, so often, goes hand in hand with classism? I am not even visible in the books that hold my core beliefs about the world in them. I find myself invisible, then, even amongst my peers, the feminists who make me feel empowered often omit me from their writings.

Invisible in the Economic Rights and Anti-globalization Movements:

I have yet to see an article on so-called welfare reform, so-called healthcare reform, the economic rights movement or anti-globalization that even so much as mentions the fact that many disabled people are destined to live in poverty for life and cannot - even if we wanted to - contribute to the machine of capitalism. Our worth as human beings in a capitalist society is therefore null. We are seen as worthless. Why this fact has not been a part of a movement that strives for economic equality and the reformation or end of capitalism is something I will never understand. You see, I am one of those people who cares about economic rights; I would be at ever protest possible, if I could be there. I cannot be there, because I cannot walk in marches most of the time. You see, I cannot usually make my voice heard with posters or slogans or chants or property destruction or anything else that involves physical activity. You see, I am invisible in a movement which is vital to my own life. If I could have a megaphone to scream about this to some activists who ignore disabled people even as they talk about economic rights I would be happy to do so. 

People who are unable to work at all know better than anyone what it means to reframe your life and the way you define yourself when your value as a human being no longer can be placed on what you do to earn money. We know the isolation of living in a world where those who cannot contribute financially to the machine are considered worthless. We know better than any other group I can think of what it means to be ostracized by the social ideal that what one does for a living defines who they are.

Invisible in Western Medicine:

We can look back through history to see how male doctors have usually treated women who had illnesses not easily defined. Were I to live in the nineteenth century, I would be, either for the fact that I am incest survivor, or for the fact that I have chronic diseases not easily recognized, labeled with hysteria. I would be, if I had the money to see a doctor in the first place, sentenced with the Rest Cure. Sadly, this same treatment is exactly what many women such as myself face today. We are told there is nothing to be done, avoid stress, get rest, exercise, eat well; we are told there is no cure because there isn't one. 

Why is there no cure? Often it is because not nearly enough research has been done to find either a cure or a very helpful treatment. Often it is because the National Institutes of Hypocrisy does not see our illnesses as worthy of much attention. I call the NIH this name because I believe, based on my experience and the experiences of many women I have met, that there are few doctors who have practiced that little phrase in the Hippocratic Oath which says, "First do no harm". To understand that last statement, you only need to meet me or any other woman with an "invisible illness" who was sick for five or ten or twenty years before she was ever diagnosed because her symptoms were not understood or taken seriously, and often were attributed to a psychosomatic cause, a derivative of depression. Let me tell you, if there are any circumstances that can lead a person to being depressed, being invisible on the planet probably is one of them. This is not a brain chemical problem that can be solved by Eli Lilly; it is, rather, a problem women are already familiar with, an imbalance of power.

The other day, after getting my prescriptions filled, while waiting for a cab to pick me up as that is the only mode of transportation I can use, since I cannot stand at bus stops, I fell onto the floor of the store and collapsed. Just then, of course, I looked like someone who was ill and got plenty of attention from a couple of concerned cashiers. I thought about the irony of this occurring right after I picked up my six medications I take every day to try to avoid these exact types of situations. You see there is very little effective treatment for the disorders that plague my life. And that bothers me sometimes.

Invisible to the Grave:

I want to see some statistics on how many women with invisible illnesses have committed suicide. I already know that many have, that many of us frequently feel suicidal, and sometimes we attempt suicide. I believe these deaths are caused by the society that believes human beings who are bed bound are as good as dead and worthless, by the misogynistic institution that is Western medicine which has not ever, and does not now take chronic illnesses that primarily occur in women very seriously. Terminal illnesses get much more funding by the U.S. government than many debilitating chronic illnesses, which may not kill a person, but may prevent her from being able to actively live in this world for all of her life. I have a combination of several of those illnesses.  I am one of those women who has often wanted to die due to a very rational lack of hope that there will be any cure to these diseases or even affordable helpful treatments in my lifetime, and due to the fact that this makes me an invisible member of the society in which I live, a person who is considered, for all intents and purposes, worthless, as she cannot do many things that are commonly considered productive.

Becoming Visible:

Not for myself only, but for the millions of women on this planet disabled by invisible illnesses, and all of the women homebound by disabilities, I want to let the healthy and able-bodied people in the world know that you can help end the phenomena of dismissing our existences. You can help prevent some of the feelings of worthlessness, and some of the suicides that result from this oppression. You can work towards making this planet a more just and fair place for all people, by not ignoring the existence of people with invisible disabilities, and by understanding that such disabilities are quite common. You can be aware that there are more creative ways for a person to be considered a productive aspect of society, than basing her worth on physical activities she does.  You can remember that a person you meet who does not look like the societal stereotype of what a disabled person looks like, may very well be a disabled person who, every other day of that month, is in her bed, not out in public. You just met her on the day when she was able to go out. Understanding that this is actually a very common circumstance in the lives of many women, you can be part of a solution to this culture of ignorance, rather than being part of the problem. 

Women with invisible disabilities need the help of other disabled women, of women in general as sisters, of socially conscious people who care about creating economic justice in the world, of medical professionals, of the human species that ignores us. We need your help to actually be recognized as human beings whose lives matter on this planet.

This is the voice of an invisible woman telling you what needs to happen to make herself and a few million women like her visible to you and to this planet. From a place of invisibility and considerable powerlessness, I am telling you we need to form an alliance. We need assistance from the healthy able-bodied people who can help us in order to become visible again. 

You may never see evidence of my existence, but I exist. I may not look sick or disabled on a good day, but I am sick and disabled. There may be no mention of me in talks of welfare reform, but I have no children and I eat with food stamps. My illness may not be something you have heard of, yet it is real. I am not invisible, and invisible is not my name. My name is Jennifer, and my reality is my own, my own, my own.



©Beverly J. Doucette. 2004 All rights reserved.