This article is one of the most touching and brave explorations of disability I have read. Kudos to Siebers for having the courage to reveal himself in such an explicit way. Siebers suffered from the effects of polio as a child, resulting in a withered right leg.
“I will try not to wallow in self-pity, fool you with false machismo, or get too philosophical—all temptations when you are exhibiting your own wounds—but I will likely succumb to all three.” At least here he admits what few writers on the subject do (since as I have discerned, most writers on disability are themselves disabled or have a direct familial connection to disability). I guess part of it is rebellion, revolting against the impotence of one’s physicality, one uses polemical rhetoric to get one’s point across.
“To be crippled in America is not the American way. In a country where image is everything, it is hard to find an example for growing up crippled and hardly worth it when you do. The icon of the cripple is paralytic, a double-edged sword, but we desire role models all the same. They tried to make one of FDR last year, setting him in stone upon his wheelchair, condemning him to a double immobility. A wheelchair made of stone is an interesting object for any paralyzed person to contemplate.” This is revealing of how difficult it must have been growing up in a society where appearance is paramount. It also explains why Siebers tried so hard to ‘appear’ normal – although he has a pronounced limp, he tried for years to play it down or conceal it as best he could. This is an interesting point of discussion, which comes under the area concerned with identity/occupation. Despite attempts by Lennard Davis and others, the concept of normal is not one to die out so easily. Even among the disabled people that I am interviewing, they all say they want to be accepted as ‘normal’ people. This is more a desire not to stick out from the crowd, be stared at or discriminated against than a wish to be standardised, average or mediocre. Understandable really, in a (global) society where image, looks and body type are of vital importance. Are we really able to see beyond the wheelchair?
“The human eye is fascinated by the powerful lines of the hero. We love in America what is beautiful and perfect and healthy. We hate the rest and tolerate it only with unease. But the human eye is fascinated as well by the broken curves of the cripple.” I think that we can say the same is true in pretty much all late capitalist societies, not only in America. Siebers points out that in nature, the lame become victims to predators, picked out for their weakness and inability to keep up with the rest of the herd. “Human beings have no hunger for their own kind, lame or not, but their eyes are no less cruel, even when they are trying to be kind.” He describes an episode where he found himself staring at a disabled person in an elevator: “I stare at him transfixed and then look down at the floor quickly when he meets my eyes, like everyone else in the elevator. The key is the “like everyone else.” I have been rendered instantly more normal by my friend’s presence. We are never more normal than when we catch sight of a cripple. This applies to the fit and unfit alike.” The same kind of incident described by Anne Finger, where a disabled person catches himself staring at another disabled person, in both cases the object of contemplation being one apparently ‘more disabled’ than the observer – I wonder if the reverse also occurs? What makes one disability worse or more severe than another? In Kazakhstan disabilities are divided into groups according to the perceived severity, but this is based on subjective medical examination. I think this dates back to the Soviet era, since I can only find reference to disability groups on websites of former Soviet republics. The only separation of disabilities into categories I can find in relation to the Paralympics.
Siebers then describes an incident where he found himself walking down an office corridor behind another man with a limp – their bobbing movements looking like a comedy act. Although he makes light of the incident, Siebers then makes this startling observation: “I have never had another cripple seek me out for company in a crowded room, the way women flock to women, men to men, children to children, and human stripe to human stripe, whether black, white, yellow, or red. We are strangers to each other.” I had no idea. Working with the people at ARDI, which tries to create an atmosphere much like an extended family, all the parents and children are engaged with each other and in each other’s lives. I didn’t realise that disabled people tend to avoid each other!
Siebers points out that the disabled are the group that has been the most violently oppressed and marginalised throughout history, from being abandoned on hillsides, fed to beasts, or dropped down wells, and explains that the Nazis exterminated first of all the disabled before turning on the Jews and Gypsies. “A white man will lynch a black man to favor his own color. A man will rape a woman for the sport of other men. Nations will destroy other nations for no reason other than self-love. It is only a matter of turning our kind against their kind. The disabled fall out of the orbit of mundane prejudice because everyone agrees about their contemptibility: white men beat up white cripples, women of all kinds and colors desert their own children if maimed, the only nation of the disabled is the nation of the abandoned and the dead. History is not on our side. Neither is God. He will not pluck a rib from me and set it free as womanly flesh.” This is really harsh, but also completely true. As Siebers notes, the children abandoned in orphanages in the ‘civilised world’ are primarily deformed, diseased, disabled.
Siebers tells of how his attempts to fit in and be normal often backfired, describing one incident where this obstinacy resulted in gym class injury, he quotes the gym teacher as saying: “They want so to be like the other children and don’t like to be left out.” Well, don’t all children want to be the same as the others? However, this stubbornness remained with the author, who goes on to describe how his attitude dictated his behaviour:
“And so for years I went on forced marches, stumbling for miles and miles. When my father asked if I wanted the family car, I said my brother could have it. I took the stairs and shunned elevators. I cut my own lawn, hung my own storm windows, dangled on ladders, and stood on the roof. I was the first to give up my seat on buses and the subway. I still walk ten feet ahead of my own family when we are en route anywhere, leading the way and setting the pace.” But finally admits that he was only fooling his own ego, and that the years of denial and exertion have actually had a negative effect on his muscles and joints.
“How to go about asking for help with dignity? How to accept charity when it is offered?” this must be one of the most difficult things for disabled people to face, especially those who have become disabled at a later stage in their life. Here Siebers has come to the realisation that he can no longer do everything by himself. He then describes an episode he witnessed where a blind man stood waiting to cross the road, refusing offers of assistance as it suited him, then positioning himself at the opposite side of the road to repeat the exercise: “He had made a ritual out of charity. Those who thought he was powerless and stopped to offer their help would discover who had the last word about power.” He had decided to empower himself, to score one of those aesthetic victories that Brodsky was so fond of! Siebers realises the pig-headedness of such actions, and decides to opt for therapy. He begins walking with a cane: “My back is no longer in pain—an odd sensation since I had not realized that I was previously in pain. The pain of forty years from a wound I was pretending not to have quiets to a whisper in my body.” A lesson to us all, maybe, but particularly to those who are in denial – the effects can be harmful!
“The self is a scar, Freud said. Everyone is a different wound healed over. But the wounds of the disabled often refuse to heal. They are not like cuts or bruises or broken bones. They are disabled wounds—that is what makes them so hard to accept by the firm and infirm alike—but they define who we are, nevertheless.” By accepting his disability, Siebers accepts who he is, and that his disability is an inextricable part of himself. In some way as well as the struggle to blend in, not to be conspicuous for one’s disability, as well as the struggle against society’s construction of disability, the hardest pill to swallow is one’s own acceptance of one’s disability. This is a very moving and poignant account by Siebers, and makes for excellent reading.