Living Like A Refugee
In 1980, The Disability Rag began publication. The following article was in The Rag's first issue, in January, 1980.
By Joanne Monroe
Everybody's got to fight to be free
You don't have to live like a refugee
-- from "Living Like a Refugee" on Damn the Torpedoes (Tom Petty and the Heartbreakers)
Radical chic has not come to the handicapped. At least not yet. When I was a child, I can remember, I used to stare with fascination at the man with cerebral palsy who worked in the hardware store my father frequented. It was understood that he did not "work" there like everyone else. He was allowed to help out because he was a "poor boy."
Even at that early age, with the holistic intuitive grasp children often have about subjects they cannot comprehend in a rational way, I knew the whole of the status disability brings with it. The disabled one is not essentially a person. He is an oddity, to be endured (for to do otherwise would be uncharitable in the extreme: a lack of charity toward those who "can't help it.").
Throughout my childhood I was taught that cripples, blind people and all other "people like that," as mother used to refer to the whole of disability society, couldn't help it. Not being able to help it became, in my mind, the mark of my personal approach toward disabled people, as I am sure it was with my close childhood friends.
Mine was a good group of friends. We did not taunt or tease the hardware store "boy" (in his thirties then, I guess), nor did we make jokes about the blind candy vendor at the post office where we trooped with my mother to mail Christmas packages or money to my errant brother. We knew that these types of people couldn't help it. This elicited our pity in a profound way. Little did any of us realize that we were then partaking In as much a cultural initiation into the taboos of physical disability as were the Indian children we studied in school who partook of their society's initiation into worship of the corn deities.
"Not being able to help it" underpinned all other awarenesses about disabled people. I knew they were not able to help their condition. but I felt no personal compunction to help these people myself. I would not have dared admit it during my preteen years, but when teachers, noting a caring and sensitive nature in me, suggested that I make my life's calling "work with the handicapped," I would inwardly recoil in terror. I knew I was better than that! I wanted to work with regular people (for, of course all good students, in teachers' minds, are also going to be teachers, so teaching was implicitly the profession implied in all these discussions), persons who could be brilliant, creative--in short, beautiful. Not the handicapped. for God's sake! To work with handicapped children would have been. indeed, the most dreary and bleak future I could have conjured up for myself. The rewards teachers always said those who worked with cripples experienced was, I knew. a consummate lie set out to encourage more recruits to this depressing but, I supposed, necessary endeavor. I would have none of it in my life; that I would see to.
I suppose if I'd have ever allowed myself to consider it, I could have known that the reason behind all this was that disability horrified, repulsed and frightened me. I'm sure I couldn't have said whether it was the disability ("the disease" I would have called it) itself or the person, or both, or something else that enveloped both like a cloud; all I knew was that the less I thought about it at all--the less it touched me, and the less, the better.
I simply didn't think about it. Like death. A taboo subject. I realize now how accurately the word taboo, in its real sociological definition, described the area of disability for me as I was growing up.
A strange thing happened: I became disabled when I was 16, of polio. The events leading up to it aren't Important. And of course I am still disabled. That can't change. Never will. What's changed is not so much my body as my mind--even though my body is radically changed. My mind is radically changed too. Did polio do that ?
I live like a refugee, indeed.
I live inside four walls. Is there a reality outside these walls, when my world is only that which I can reach with my hand, which is about 8 inches? For someone Who cannot move, come bell or high water as my mother liked to say describing items of finality, reality is limited.
There are those among us disabled who would deny that; who would say they are "normal." They lie. Their lives have been set for them by others, I now know. It cannot be changed, physically changed, by them alone. They have no power over their lives
Radical chic, you see, has not come to the handicapped. We are the most put upon, discriminated against, unemployed, ignored, undereducated, poorest minority in the United States; still--after minorities have come into and gone out of and come into and gone out of fashion several times.
We live in substandard housing. We cannot work. for we cannot get to the workplace. We are denied, denied. We live off others, like refugees. There is not a day goes by that a disabled person among us fails to come face to face with that reality, the refugee reality, whether he or she will admit to it or not: our closest parallel is that of refugees, surviving through the activities and help of others--not at home even in our own land.
We have no power over our lives.
And no one even believes this problem I've just described even exists. But ignoring us will not make us go away, although it has made us, for too long, disappear from the American scene. We will someday live on the conscience of this nation. But not now, not just yet.
None of us yet believes this to be anything other than our lot in life, sickening as it is. Like me, too many of the disabled of this land believe that the only reality we will ever be able to influence is that within the four walls of the rooms most of us live our lives in, that which our fingers can actually touch.
Those of us who can see with our eyes cannot, however, control with our eyes. Our words bring no control, for in this culture. words are only symbols of power, meaningless unless they can be backed up by physical reality. The real meaning of power, in this country, is still the Old West sheriff. who can back up his words with physical control. Physical power is the only real power: you learn that with the thud of reality the moment you become disabled. All the philosophy and theorizing in the world cannot change that knowledge. Lip service is always paid to the superiority of the mind, of its power and beauty over mere physical power and beauty, when talking about power to a disabled person. We see through it, though. At this time in our society, I could no more bomb a building or demonstrate against wrongs committed against disabled people than an elephant can sprout wings and fly away. This essential difference between us and other minorities is all too important--and it's what our oppressors never forget. Though they never mention it (they never have to) they know, as we do, that we can have only as many rights, as many chances to seize power, as our able-bodied oppressors will give us. Physical reality is the only reality. Radical phraseology simply cannot be used by us; we cannot yet carry out our threats without able-bodied support--and it has been missing.
Able-bodied people help disability causes in a curious way: they help us, but they won't work for us. We never have the power, not even for an instant. We have no way to enforce any power. Any power we mouthe is only a bluff.
The only solution, as I see it, is for all of us crips and freaks to band together, making of our half bodies the strength of whole bodies from our several parts: I will take the strong arms and legs of my deaf brother who will hear my words through the signs of my blind sister, forming signs with hands that will obey her mind as mine will not do.
Together we can become powerful--even physically powerful.
Is bombing buildings is what is needed to get our society to stop building us out of their cities; forcing us to live like refugees? Then we will have a true threat of bombing. Is marching necessary to let the creators of today's robot technologies know that the time has come to give us these tools, ours by disabled birthright, to turn into our mechanical arms and legs and eyes and voices and brains? 'Then we will march. We will seize the arbiters of technology who continue to play in their research labs, fascinated with designing robot toys at $15.95 for lazy children, when we silently scream for the same technology to be applied to our impoverished, refugee lives.
For this country is as much ours by birthright as those who won it with their fists. Someday we will demand all that we cannot demand while our able-bodied "helpers" hold us back. Together we will be strong in body. God known our minds are strong already.
And then I think: "This will never come to pass. We will always live like refugees. It has been ever thus, and we cannot change it. We are the largest, poorest group in the United States, probably in the world. We cannot even vote unless someone helps us. Our society has been built up against us, brick by step by sign, locking us out. We will never get in."