This is a presentation prepared to be delivered as a part of Research Paper Writing and Presentation Competition organized by PhD Facilitation Centre , Maharaja KrishnaKumarsinhji Bhavnagar University, Bhavnagar, Gujarat, India. Research Paper Title: " Breaking Bones or Barriers? Disability, Crises and the Role of Society in Jodi Picoult's Handle with Care.

1. Research Paper Writing Competition
Research Paper Presentation
March 11, 2022
Maharaja Krishnakumarsinhji Bhavnagar Uni.
Bhavnagar
Aahuti D Dhandhukia
Research Scholar(Ph.D)
Department of English
MKBU
Asst. Prof.(English)
Government Engineering College, Bhavnagar

2. “Breaking Bones or Barriers?”- Disability, Crises
and the Role of Society in Jodi Picoult’s
Handle with Care
Author Jodi Picoult
www.jodipicoult.com

3. Significance of the Paper
 Isolation, dismemberment and deprivation of the disabled people is
inseparable to human experience and existence.
Human experience of Disability needs to be explored and to be
integrated in teaching and scholarship.
Disability Studies examines meaning and consequence of disability as
socio-cultural construct to understand lived reality of disability.
Representation of disability in literature shapes people’s perceptions.
Realistic representation helps us empathize to disability experience.
Insight to understand disability is essential to create barrier-free and
inclusive society. (UN’s MDGs and SDG-10 of Reducing Inequality).

4. Disability and Social Perspectives
Socio-cultural perspectives on disability continue to vary and
change (Munyi 1).
Disabled people are completely rejected or treated as economic
liability (Munyi 2).
Society discriminates and reinforces isolation to physical,
cognitive, emotional or sensory difference of disability (Kuppers
109).
Disability, in America, is used to justify inequality to other
groups and still is absent from historical inquiry (Bantyon 17).
disabled

5. Medical Model
• It views disability in terms of ‘impairment’ and seeks
‘correction’ or ‘cure’.
• Considers disability as ‘personal tragedy’, ‘life-long
dependence’ and ‘burden to health-care system’.
• Medical Humanities including literature and art can develop
the doctor’s insight to understand patient’s subjective world
(Oyebode preface vii). Therefore, it can become essential for
disabled people seeking medical assistance.

6. Social Model
• Disability Activism distinguishes between ‘impaired by body’
and ‘disabled by society’.
• Inaccessible structure and apathetic attitude of the society
makes person ‘disabled’ in social environment. The onus of
responsibility is shifted from person to society.
• Leads to the formation of disability legislation world-wide.
• Challenges: (qtd in Shakespeare 15-17)
o Ignores voice and agency of disabled person.
o Reduces disability to singularity.
o Accessibility to each type of disability is not possible.
o Does not address emotional experience and pain of disability.

7. Literary Disability Studies
• Addresses fundamental human experience of disability with its
wholesomeness.
• In English Literature, disabled characters are rare and marginalized.
They are presented to bring out virtues of protagonist.
• Literary critics often tend to interpret disability as literary device, which
restricts our understanding of disability experience.
• Considers disabled characters as “complex characters living everyday
life in different way” (Hall 2).
• There exists a gap between disability experience and its
representation in American literature. Stereo-types to arouse pity and fear
highlights physical difference (Garland- Thomson 11).

8. Research Gap
• To study severe and rare disability in literature which is
depicted at the level of character and theme.
• To study type, nature and intensity of disability in disability
experience.
• To study interactive nature of Medical Model and Social Model
for certain types of disability.

9. Research Objectives
• To understand human experience of severe physical disability
of Osteogenesis Imperfecta
• To analyze the nature of Medical Model for the disability of
Osteogenesis Imperfecta
• To explore physical, emotional, familial, financial, educational,
moral-ethical crises presented in the novel Handle with Care
• To examine the role of contemporary social institutions in the life
of disabled child with Osteogenesis Imperfecta

10. Handle with Care (2009)
by Jodi Picoult
The literary text has been analyzed with following aspects:
• Osteogenesis Imperfecta and Medical Institution
• The State and Accountability of Conduct
• Dismemberment at School
• Wrongful Birth Suit and Moral-ethical implications
• Technology and Media
• Disability, Care and Family
• Disability and the Church
• Role of Disability Organizations
• Desire and Death

11. Willow Tree and Breaking Bones
https://appiamerica.com/lessons/chapt
er-13-osteogenesis-imperfecta/
Willow Tree (Google image)
Bends but does not break

12. Osteogenesis Imperfecta and Medical Institution
• The novel introduces Willow’s disability in a straight forward way,
in terms of impairment in Prologue.
• OI type III is severe and rare disability with respiratory issues,
joint problems, bone pain, mussels weakness, skull-spinal
deformity and short stature.
• Likely emotional disorders are anxiety, post-traumatic disorder,
awareness of being ‘different’ and suicidal thoughts.
• Non-disabled doctors’ opinions perpetuate myth about disability
(Brisnden 173). The expert doctor of OI lacks in empathy.
• Direct association of medical institution differs according to type
and intensity of disability.

13. Disability and Accountability of State
• Disability legislation provides protection but ignorance of
government officials about particular type and nature of
disability does more harm to disabled persons and family.
• Willow’s bones break accidently but parents are accused of
child-abuse. They are not allowed to see Willow at hospital.
• Due to insensitive conduct, family trip turns out into a disaster.

14. Dismemberment at School
• inclusive education is master-key to inclusive society.
• Infrastructural inadequacy and lack of empathetic attitude
make disabled child Willow feel estrangement and
dismemberment at school.
• Though she is called ‘Little Einstein’ (19), she needs to go to
school for physical activities and socialization.
• In stead of growing, Willow experiences infantilization when,
because of her short stature she is assigned the role of baby in a
house-game and she cries out “I’m not a baby”(109).
• When education institute escapes from its obligation, Willow
breaks hardest shoulder-bone and looks like “broken wings of
bird”(108).

15. Wrongful Birth Suit and
Moral-ethical implications
• Lawyer’s perception about disability-
“emotional burden of living day in and day out with the child
with these particular health-problems” (49).
• Wrongful birth suit assumes that had the mother been informed
of severe disability of foetus by her obstetrician, she would have
choice to terminate her pregnancy.
• For doctors, it is moral-ethical dilemma: How to decide which
disabilities are worth living, and how far the doctors have
authority and accountability to approve or annihilate any
human birth?

16. Cont…..
• Charlotte initiates this suit for financial security for her
daughter Willow, but her win of law suit and rewarding
damages turns into loss as husband Sean seeks divorce and
Willow feels abandoned.
• Women’s rights over their body confront with disabled children’s
birth and existence. Disabled children are viewed as ‘mistake’.
• Selective termination of pregnancy is painful for mother.
• Such concept leads to eugenic concern of genetically
designed babies and extends the rights of state to normalize
the body.

17. Technology and Media
Technology has empowered
the life of disabled people by
offering opportunities of
learning and socializing and
thereby overcoming mobility
restriction.
During hospitalization and bed-
rest, Willow continues internet
surfing and learning new facts.
She contacts disabled friends
through e-mail.
• Print and electronic media
play disruptive role as they
give wide coverage to
wrongful birth suit initiated by
Charlotte and people suspect
and criticize her for this
action. Willow and Amelia
come to know the details of
law suit through media
reporting and feel insecure
and humiliated in public.

18. Disability, Care and Family
• Parents were informed about the disability of OI and they
welcome Willow’s birth with eagerness and warmth.
• Mother stops working as chef and provides constant care to
Willow. Whenever Bones break, it is she to rush to the hospital,
stay with Willow, dresses her and takes her to the washroom.
• Father admits to Willow: “I love you in theory, if not in
practice”(233).
• The novel explores sibling care, concern, ignorance and
rivalry. Amelia is aware of what Willow is good at and what she
can not do. As Willow consumes parental priority, she feels
ignored. She also falls victim of bulimia and self-injury and gets
restored through rehabilitation.

19. Disability and the Church
Religion treats disability as either
angelic or evil but not human. The
Catholic priest considers Willow “a
special child” but consoles father
Sean as “God does not give
burden one can not handle”(188).
His desire to heal Willow through his
blessings degenerates disability
to a curse.
The Role of Disability Organization
Disability activism has raised self-
awareness as well as community-
identity among the disabled people,
which formed cross-disability and
disability-specific organizations.
Charlotte takes Willow to Biannual
Osteogenesis Imperfecta convention,
where Willow meets likewise people
and feels Normal. This Convention
makes Willow feel happy what she
missed at school.

20. Desire and Death
• Contemporary American society is not presented as completely
barrier-free and accessible. Places of occupation and
recreation are very few for wheel-chair users.
• At the end of the novel, we are introduced to Willow’s voice.
As she feels bored at home, she desires for adventure.
• She tries to walk on frozen ice of a pond, ice breaks and
Willow is drowned.
• Willow is happy that it is ice that breaks… not she.
• The author may have wished this novel to be ice-breaking to
empathize with disability experience and create inclusive
society.

21. Conclusion
• Severe disabilities such as OI are crises that are immense and multifold.
• Even accessible society can not stop bones from breaking, but inclusive
society can ensure that hopes and desires of the disabled do not break.
• Severe disability of OI are precarious human identity that a small lapse
in care, a small step to fulfil human desire may turn devastative.
• Family is back-bone for disabled children; and Disability Studies should
address kinship relationship and policy and programmes should consider
empowerment of family along with disabled person.
• In the case of certain disabilities, Medical Model cannot be dispensed
with and hence, needs to emancipate with Medical Humanities.
• Different disabilities need different infrastructure for accessibility.
• Medical Model and Social Model should be interactive to improve quality
human life of disabled people.

22. Works Cited
• Brisenden, Simon. "Independent Living and Medical Model of Disability." Disability and Society 1.2 (1986): 173-178
• Convention on the Rghts of Persons with Disabilities. 2008. United Nations, Department of Economic and Social Affairs.2008,
https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html.
• Disability and Millennium Development Goals: A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium
Development Goal Efforts. United Nations, Department of Economic and Social Affairs. 2011, www.un.org.<
www.un.org/disabilities/documents/review_of_disability_and_the_mdgs.pdf.
• Douglas, Baynton C. "Disability and the Justification of Inequality in American History." Diability Studies Reader, edited by Lenard J. Davis, 4th ed.,
New York, Routledge, 2013, 17-33.
• Garland- Thomson, Rosimarie. Extra-Ordinary Bodies:Figuring Physical Disability in American Culture and Literature. New York: Columbia University
Press, 1997.
• Hall, Alice. Literature and Disability . New York: Routeledge, 2016.
• Kuppers, Petra. Disability Cilture and Comminity Performance: Find a Strange and Twisted Shape. UK, Palgrave Macmillan, 2011.
• Longmore, Paul. ""Heaven's Special Child"- The Making of Poster Children." Disability Studies Reader. Ed. Lennard J Davis. 4th Edition. New York:
Routledge, 2013. 34-41. Print.
• Munyi, Chomba. "Past and Present Perceptions towards Disability: A Historical Perspective." Disability Studies Quarterly 32.2 (2012).
• Oyebide , Femi. Mindreadings: Literature and Psychiatry. Ed. Femi Oyebode. South Indian Edition. London: Byword Books, 2009.
• Picoult, Jodi. Handle with Care. New York: Washington Square Press, 2009.
• Shakespeare, Tom. "The Social Model of Disability: An Outdated Ideology?" Research in Social Sciences and Disability 2 (2002): 9-28.
• Snyder, Sharon L, Bendra Jo Brueggmann and Rosemarie Garland- Thomson. "Introduction: Integrating Disability into Teaching and Scholarship."
Disability Studies: Enabling Humanities. Ed. Sharon L Snyder, Brenda Jo Brueggmann and Rosemarie Garland- Thomson. New York: The Modern
Language Association of America, 2002. 1-12.