Halfway through her memoir, Harilyn Rousso writes:
. . .I have learned to choose my words carefully. . . my words are sparse as I try to second guess what other people would want or need me to say and seek to minimize a difference of opinion that might lead to rejection.
My fear of the destructive power of words – to reveal the defective self that will prove unacceptable, to explode into conflict that will lead to loss – continues to silence me. (97)
This conflict between speaking up and remaining silent may account for the understated revelations of Rousso’s memoir, the brevity of the essays, and the restraint she shows when recounting some of the most important events of her life. While her critiques of her own attitudes are richly textured, her analyses of others’ destructive behavior and attitudes are spare.
Passing. It was the way to go in the mid-twentieth century and those of us who didn’t need to “pass” were oblivious to the burden or the danger that passing imposes. The burden was transmitted through parents as well as strangers.
When Rousso came home from school in tears to tell her mother that she was being teased because of her awkward gait, her mother’s response was “that I should change the way I walk and move my body so I would look more ‘normal’” (45). Thus, the child Rousso’s closest ally and strongest supporter joined the rest of society in condemning her daughter’s differences. Sadly, Rousso incorporated that attitude into her view of her own self-worth. Small wonder she writes:
The people with C[erebral] P[alsy]… seemed like they couldn’t have much of a life. I assumed that no one would love them… They seemed not quite human … I couldn’t bear the thought of being like them. Not me. I was OK. I was “normal.”…
I didn’t want to know about CP because I didn’t want to have it. And I didn’t want to get to know anyone who had CP or any other disability. I wanted to be left alone and to be like everyone else. (4-5)
Rousso had plenty of company in the mid-1950s when she was a child. Poet, editor and director of students at a guide dog training school, Stephen Kuusisto was born with progressive vision loss.
[B]lind I’m a fatted failure; posing as a sighted person, I’m on a terrible high-wire.
But people will only like me if I can see….
In the meantime I’m a tired kid. It’s preposterous to live as though you can see. Looking back, I can scarcely imagine the energy it took.1
Our dismissal of disabled people is so complete that we may be startled to see a group of disabled adults at a table with aides at a chain restaurant or a group of blind children swimming together at a local beach. The fact that these people are in a group, supervised by hired assistants, should remind us that in most cases, except for very determined people with chronic illnesses or disabilities, we have shut “unhealthy” people out of the mainstream.
It’s been going on for a very long time. At the turn of the 19th century into the 20th, people with visible disabilities mainly stayed at home and didn’t discuss their maladies. Emily Dickinson likely hid epilepsy. She wrote elliptically about her health and stayed at home even avoiding most visitors, because an attack could happen any time without warning.
It burned Me – in the Night
It Blistered to My Dream
It sickened fresh upon my sight
with every Morn that came2 –
Adelaide Crapsey, a near contemporary of Dickinson’s and also a poet, fell ill with vague complaints just when she “should” have been taking on adult tasks of family and career. Unlike Dickinson – and like Rousso – she undertook a determinedly ambitious professional life, teaching when well enough to do so, research and travel (primarily in Europe) when unable to work. She, too, judged her value by her ability to perform “normal” tasks when she was 32 years old:
I would try to get a job at once but I am afraid it would just mean another breakdown… I think my best way is to continue to look after this absurd and unpracticable health of mine and to get solider ground under my feet and then try for something really good rather than fritter away what small amount of strength I have on no-account things.3
By the mid-20th century, perhaps partly in response to wounded World War II veterans along with polio survivors, people with disabilities had become more visible. However, conflict remained between concealing or revealing the practical complications of disability in a world built for those who did not need to think about stairs, or buttons or shoelaces. While a public or “normal” life was easier to attain, it often came at the high price of denial.
This is the world that Harilyn Rousso encountered because of cerebral palsy caused by a clumsy attempt at delaying her birth to wait for the doctor (resulting in an oxygen crisis). Faced with challenges to walk, run, and play with other children along with a life-long struggle to attain and maintain clear speech, Rousso often performs two tasks at once: the assigned task (e.g. give a speech) and the additional physical challenge of producing each syllable.
Rousso’s birth injury did not prevent her from obtaining a first-rate education, finding enduring love, or becoming a significant figure in the women’s and disability rights movements. As a painter with gallery shows to prove her talent, and as a mentor to adolescent girls attempting to “have a life” in New York City before “handicapped accessible” public transportation was readily available, she has led a life with significant accomplishments by any standards.
But the impact of other people’s and her own feelings about her speech continue to exert their influence. And always she lives with the possibility that first impressions will blind others to her contributions.
And still, in the 21st century, Rousso has plenty of company. As a poet and new media artist, Millie Niss could work without dealing with others’ attitudes toward her appearance even as she dealt with a progressive autoimmune disease (Behcet’s Disease) that left her bed-bound for months at a time. In that sense, the arts are a great leveler, providing an avenue in which (cliques and canons aside) one’s output is viewed without bias. But, when Niss won an invitation to present at a conference in 2009, she felt it necessary to write:
I wanted to warn people who have met me before that I have changed a lot physically and will be using a power wheelchair at the conference. I am not officially embarrassed (or proud) to be disabled but I’d still prefer to have old acquaintances greet me with “Hello, glad to see you!” rather than “Omigod, what happened to you?”4
For Rousso, perhaps the harshest lesson came in her choice of career. Next to the story of her birth, her expulsion from a training institute for psychotherapists is one of the most painful and frankly enraging aspects of her life. Having completed her graduate education, she entered the institute, determined to become a credentialed therapist for the disabled. And was dismissed because her appearance might discourage potential clients from using the institute’s services, should a potential client catch sight of her in a hallway or consultation room.
Miraculously, Rousso was able to gather sufficient confidence to fight this bigotry. Unfortunately, the lawsuit was unsuccessful.
That an institute created for the purpose of helping people should inflict such discrimination is breathtaking. Even more breathtaking is the fact that this rejection failed to put an end to Rousso’s ambition or determination. She does not name the institute. I wish she had.
She does not linger over the insult beyond recognizing the bigotry. She moves on to establish a foundation to help adolescent girls who have cerebral palsy. She finds other professional women with cerebral palsy who are equipped by training and outlook to become mentors of the young women, and she balances the reality of those adolescent lives with the possibilities represented by the mentors.
As she becomes recognized for her work with these young women, Rousso is invited to serve on foundation boards and to attend international women’s conferences in Rio and Beijing, Even in these settings, she has been unable to forget for very long that she is different.
Sometimes, as the only disabled person present, she has risked rejection to raise awareness e.g. that grants to enhance the lives of handicapped people, while part of the foundation’s mission, have been overlooked in practice. Other times, Rousso has tasted “the delicousness of community” when several disabled speakers and participants at a 3-day meeting – hence time to organize – successfully bonded to unmask biased views of disability in the conference’s arrangements and presentations.
Rousso’s memoir is replete with such dilemmas, which she lays out with little apparent self-protection. Her struggle with shame is an ongoing challenge which fuels her efforts to assist adolescent girls, hoping that they can escape a legacy of shame even as they struggle both to honor the lives they have and to join the mainstream.
Rousso’s speech and mobility worsen in middle age and force her to see again that part of her self-acceptance has been built on a foundation of feeling superior to those with more limitations than hers. She does not accept or respect such revelations. Her willingness to expose her own prejudices about disability, and her determination to work through her own biases challenges her readers to do the same.
Valuable as Rousso’s discussions are, I longed for much more about the impact of that initial medical mistake on Rousso’s own thinking. How has she dealt with the reason for her cerebral palsy? What impact has the mistake had on her family relationships and particularly on her mother? Were her mother’s efforts to erase Rousso’s limp an attempt to undo the error? What role, if any, did guilt play?
I would like to know how she is able – if she is able – to obtain consistent, competent and sensitive medical care, especially as she ages. This is an ongoing challenge within my own family, and I am sure I am not alone in desiring to hear from others about how they have gone about dealing with bias from health care providers, for they are not immune from bias, as Rousso demonstrated in her story of the psychotherapy institute.
I am left hungry for more details, more opinions, and also more paintings, from this gifted, articulate woman. Her memoir, informative and well-crafted as it is, leaves us with an impression that it is still very complicated for a person with visible disabilities to maintain personal privacy and dignity, yet also freely to enter the world and freely express what she perceives. I came away from this book believing that Rousso has much more to say, and I hope she will continue to speak.
For Harilyn Rousso
If my mother had given birth in a field
would my walk be smooth
my speech clear
my arm responsive to my call
If my mother had given birth in a field
would I climb aboard buses and planes
with sure steps
walk museum halls with undivided attention
between the masterpieces before me
and aging, uneven floor beneath my feet
and would I carry groceries upstairs with both hands
If my mother had given birth in a field
would my intelligence be a surprise
my painting an anomaly in viewers’ eyes
my choice of profession subject to censure
because my appearance does not
meet the definition of normal
however “normal” is defined
Because the doctor made us wait
my triumphs are “in spite of”
and not “because”
I am what I set out to be
before I left the womb
— Martha Deed
Reviewed by Martha Deed, PhD
psychologist, poet, member of Consumer Union’s Safe Patient Project,
author of The Last Collaboration5
1. Stephen Kuusisto, Planet of the Blind. New York: Dial, 1998, 42-43
2. Thomas H. Johnson, ed., The Complete Poems of Emily Dickinson, Boston: Little, Brown, 1960, 171-172 (#362 ca 1862).
3. Letter to Mother, September 23, 1910. Adelaide Crapsey, Susan Smith, eds. Albany: SUNY, 1977, 198.
4. Posted on Webartery, October 8, 2009
5. The Last Collaboration (furtherfield.org, 2012) is a mixed media reconstruction of the death of the reviewer’s daughter, Millie Niss, from multiple medical errors in the Intensive Care Unit of a community hospital.