Michael Northen

DISABILITY POETRY IN 2008: A SOIL SAMPLE (Part 1)

Disability poetry can be recognized by several characteristics: a challenge to stereotypes and an insistence on self-definition; foregrounding of the perspective of people with disabilities; an emphasis on embodiment, especially atypical embodiment; and alternative techniques and poetics.
                                              -Jim Ferris

In “A Short History of Disability Poetry” I argued that the genre of disability poetry could be said to have officially begun with the publication of Towards Solomon Mountain, a collection of poetry that A. J. Baird assembled based upon an ad put in Kaleidoscope magazine. As Kaleidoscope editor-in-chief Gail Willmott states, “When Kaleidoscope began, we were unique in the field of disability studies as a literary and fine arts publication.” Now forty years after Baird’s publication, disability poetry is beginning to get recognition as a genre, and, in addition to Kaleidoscope, there are three other publications that routinely publish disability poetry: Breath & Shadow, Disability Studies Quarterly, and Wordgathering. Of these Wordgathering, the only publication of the four to concentrate primarily on poetry, is the new kid on the block. Nevertheless, with two years under our belt and over 100 poets published, I would like to offer some observation about the present state of disability poetry as reflected in the writers who have contributed to our journal.¹

The poems that Wordgathering sees can essentially be divided into three groups, in terms of their impact on the discourse of disablity poetry: (1) poems about disability by writers with disabilities, (2) poems about subjects other than disablity by writers with disablity, (3) poems about disability by writers without disabilities.² Often, the same poets really belong in both of the first two groups. The poets being consider here are those who may not be known to the general public or even in academic circles of disability studies, but who have accumulated a substantial amount of poetry and often contributed to the theory of disability poetry through their essays and prose writings.³

One of the unifying characteristics of these writers is the embracing of disability as a perspective through which literature can be viewed; one that has a contribution to make. While each poet's view has transformed over time, they have all arrived at a point of view which rejects language and stereotypes that focus on pity, charity, overcoming, tragedy, inspiration, and fixing. No poet has put this better than Sheila Black:

Crippled they called us when I was young
later the word was disabled and then differently abled,
but those were all names given by outsiders,
none of whom could imagine
that the crooked body they spoke of,
the body, which made walking difficult
and running practically impossible,
except as a kind of dance, a sideways looping
like someone about to fall
headlong down and hug the earth, that body
they tried so hard to fix, straighten was simply mine,
and I loved it as you love your own country
the familiar lay of the land, the unkempt trees,
the smell of mowed grass, down to the nameless
flowers at your feet—clover, asphodel,
and the blue flies that buzz over them

Black's poetry is wide-ranging, focusing on topics as diverse as the plight of maquiladoras in Las Cruces and raising her children. She is neither obsessed with writing about disability nor shy of it. When she does write about disability, however, she tackles important issues head on.

One of the issues Black raises is what poet Ona Gritz terms "Passing." Much like other minorities - Jews in Hitler's Germany, African-Americans before the Harlem Rennaisance or gay men in the late twentieth century - there is always a strong urge to pass oneself off as a member of the dominant group. In the case of the physically disabled, this means, as able-bodied. As Black succinctly puts it, in her youth she would "Try so hard to fit in you could see it - a sheen in my skin." Gritz describes this experience of passing even more fully.

She walks as if favoring a sore foot
and her one hand can’t distinguish
coins from stones. Mostly, she imagines,
no one knows. At last week’s dance, a boy
with sleek hair kissed her in the corner.
Tonight, her youth group is doing a yearly
good deed. Leaning on a wall, she watches
guests crowd the gymnasium in wheelchairs.
Skewed legs wrack with sudden currents.
Arms lay folded and stiff like cooked wings.
Her friends hold the twisted hands in their own
then sway, grace among the wheels. She’ll choose
a partner among the palsied strangers
when there’s a song she can get lost in.
It will be like dancing with her secret self.

Yet it wasn't until I met Dan [Simpson], my first partner with a disability, that I started writing about my own differently moving body. It took loving someone else, disability and all, for me to embrace myself so completely.

The shame I faced years ago
when Brian called me a cripple
in the lunchroom.

and chronicles how

For weeks, I try to conceal
the limp distorting my stride,
making it difficult to run during a recess,
to skip during lunchtime.

Like Ferris, Cronin also critiques the treatment that children receive at the hands of the medical establishment. In one poem, she portrays the insensitivity of the orderly who:

stands
with a clipboard in the doorway
of the four bedded hospital room
and bellows each patient’s name then
Bowel movement today?

... he cannot look at me as he tells me my name means pretty. His eyes roam above my head, search for somewhere safe to land, away from my twisted body. He does not want to see the curled and knotted joints rebelling against my name.

I want to reassure him, to say its all right. I have learned to accept this body that betrayed me, that continues to betray me each time another part fails. I want to tell him not to worry there is more to life than being pretty, being desired. I know the thoughts of touching my deformed joints repels him, but that's all right because I have come to love who I am, with my curves and bends in unexpected places...

I want him to know my body is not my prison,

The issue of beauty is one that cuts across many women poets with disability who write about their bodies. Kathi Wolfe, a poet with visual impairments, adds her voice to this conversation as well:

Even blind girls get the blues,
I tell my mother when she wonders
why I expect to go to the senior prom
when no one would ask someone
like me, and why I can't be happy
spending Saturday evenings curled
up with a large print book

If Cronin's project is to portray the lives of children with disabilities, Wolfe's is dispel the images and myths that surround disability. Much of her work addresses this through the reconstruction of the life of Helen Keller. Through Wolfe's words, Keller points out her situation:

Here I am,
a well trained seal
between clowns
and singing dogs.

To dispel both the image of the curiosity and, the even more oppressive image of the sweet innocent, Keller taunts the reader:

Did you know
that Mark Twain taught
me to play pool and spit tobacco?

Of the women poets who have written for Wordgathering, with the possible exception of Margaret Price, Wolfe is the most unrelentingly political. Not only does she work hard to show the ways in which disability is a social construction, but she adds another dimension to the discussion on sexuality that Black and Gritz explore. While Wolfe, through her poems, shows how Keller had the same conventional sexual drives as any other woman of her generation, the title of her essay "Finding My Muse: On Being a Crip, Queer Poet", discloses another arena where discussion needs to be developed, the intersection of disability and Lesbian poetry.

To the four poets already discussed, another name needs to be added, that of Ellen LaFleche. While LaFleche can certainly write about the body, as she does in her Estella poems and in the prose poems that reinterpret fairy tale figures with disabilities like Rumpelstiltskin ( and in the course challenge both the medical establishment and provincial perceptions ), she also investigates mental states.

My doctor says
the new drug is working wonders

But my angel does not dance.
She holds her cracked skull in her hands.
Her cement lips are parched, so parched.
She is cold, cold to my touch as a bone-yard stone.

Just as Ferris, Kenny Fries, Cronin and Black (in the poem cited above) challenge the idea that all disabilities need to be "fixed," LaFleche asks if the same might also be true of "abnormal" mental states.

Black, Gritz, Cronin, Wolfe and LaFleche all speak of disability from personal, embodied experience of the type Ferris' definition suggests is inherent in the nature of disability poetry. There are, however, a number of gifted poets contributing to Wordgatheringwhose personal experiences with disability come not directly from their own bodies but in what might be described as the role of care giver. Among these are Barbara Crooker, Rebecca Foust, Thérese Halscheid, Patricia Wellingham-Jones, and Megan Webster. Each of these writers has produced a chapbook of poetry which, with the possible exception of Crooker's, might be seen as a narrative depicting the dynamics of the relationship between the poet and the person they are caring for. For Crooker the disability is autism, for Foust Aspergers, for Halscheid and Wellingham-Jones dementia, and for Webster bi-polar disorder.

As parents of children with disabilities that affect their thought processes, Crooker, Foust and Webster all find themselves mediating between society's expectations and their children's actions. This frequently forces them into the roll that Foust describes as flimflam artist. As poets, on the other hand, each is challenged with getting the reader to know the mind of her son - a revelation rather than a covering up.

Crooker: And my son David sings his own song:
snips of commercials, fragments of Sesame Street,
finger plays from school—echolalia, the speech
therapists call it, this repetition of what's heard,
sounds rebounding inside his head.

Foust: My son is not good with emotion,
or doing things just to ease
understanding; there has to be
a reason that makes sense to him;
he does not usually notice
when people are displeased.

Webster: I see my son at fourteen
caught in the tale of the white whale.
Now caught in the belly of the
whale – Nantucket Jail,

Another array of poems form for these writers around the blame and, sometimes, feelings of guilt, a topic Foust emotionally explicates in "Refrigerator Moms."

Halscheid and Wellingham-Jones, on the other hand, do not face the accusations the other three poets do. In fact, as caregivers for family members with dementia (Halscheid's father, Wellingham-Jones husband) quite the contrary is true. As a result, their poems need not be defenses of family members or themselves. They still challenge some aspects of medical treatment, but they are free to focus on a description of the inevitable changes in the person they love and on the changes in relationships that result. These are sometimes relationship changes that are challenges in themselves. Looking back at herself as a young teenager Halscheid says:

Because I needed a father
more than myself,
because I cherished my father
I kept seeing things I could not say
I kept not saying
until it became only important
not to talk.

While it could be easily argued that Halscheid's Last Movements⁵ and Wellingham-Jones' End Cycle fit more comfortably into literature of illness than of disability, Wellingham-Jones' earlier book Don't Turn Away provides an example of the way in which social attitudes construct disability. The book chronicles in poetry, her own experience with breast cancer from initial first discovering a lump at which she

wanted to bite off
those traitor fingers,
spit them out

through diagnosis and mastectomy to acceptance of her new self-image. That the book teeters on the edge of seeing breast cancer not simply as a temporary personal impairment but in the larger context of a socially constructed disability is attested to by a follow-up poem, “Walk of the One Breasted Women” in which Wellingham-Jones applauds the unification of women in a breast cancer survivors' march. When put in the larger context of the issues that Gritz and Cronin raise around the damage that social concept of beauty can inflict, Wellingham-Jones' Don't Turn Away qualifies for a seat at the table in the discussion of disability literature.

One of the joys of looking back over the poetry published in Wordgathering is the discovery of the unexpected - or perhaps, the only vaguely perceived. It was not until I was well into writing this essay that I realized the extent to which the overwhelming majority of writers who had made substantial, and sustained literary contributions to the genre of disability poetry were women. This seems quite an irony since, in college level disability courses the poets studied, if poetry is represented at all, are predominantly men: Larry Eigner, Jim Ferris, Kenny Fries and Stephen Kuusito. Whatever the reasons for that may be, after discussing the work of the first four poets - Black, Gritz, Cronin and Wolfe - it seemed to me that these women had a great deal to say to each other and I made the decision not to allow males voices (other than mine) to enter the discourse for the time being. It is hardly surprising, given the lingering patriarchal structure of our society, that those poets who wrote the most and the most intimately about caregiving are women. Neither is it surprising that poems dealing with cultural constructions of beauty and their impact upon women with observable physical disabilities would be prominent. I will delay any other generalizations until the March 2009 issue when some of the male writers will have a chance to weigh in. In this (now) first part of the essay, I have emphazied the first two prongs of Ferris definition of poetry - the insistence on self-definition and the emphasis on embodiment. In the March issue, in addition to looking at the male perspective, I will take a look at some of the writers like Petra Kuppers and Laurie Clements Lambeth who are dealing with the third and perhaps most challenging prong of Ferris definition, "alternative techniques and poetics."

I like think that there is much to explore in the poetry of the writers discussed here and hope readers will read more of the work of these poets, sampling each and thinking in terms of the dialogue they are building with each other around disability and poetry. A good place to start is with the Authors Index included in this issue of Wordgathering. It will lead you to some of the writings that have been published in this journal and from there, I hope, you will seek their work in their books and in the other magazines in which they have been published.

1. While this essay only discusses the work of poets actually published in Wordgathering, it also draws from some of the work published by the Inglis House Poetry Workshop in some of their print publications.

2. We also, believe it or not, receive poetry that is neither about disability nor by writers with disability, but for the purposes of this essay, those poems are irrelevant.

3. Writers like Jim Ferris and Neil Marcus, who we have published, were well known to the disability community before the advent of Wordgathering and continue to play important roles. Petra Kuppers is also widely known in the disabilities community but it is only within the last few years that she has turned her attention to poetry.

4.Published in Bone and Tissue by the Inglis House Poetry Workshop, 2008.

5. To be fair to Halscheid, Last Movements, as was pointed out in an earlier review, is much more about the relationship between father and daughter than it is about illness, per se, and stands strongly in the tradition of women poets like Sylvia Plath, Ann Sexton and Sharon Olds.

Michael Northen is the facilitator of the Inglis House Poetry Workshop and one of the editors of Wordgathering.