Various inequalities exist in structured social systems. Women, people of color, the uneducated, the poor, and those who face disabilities have often gone voiceless and powerless throughout history, and their struggles persist today. These groups of people are marginalized and face discrimination, prejudices, and sometimes oppression. Nursing, a profession predominantly populated by women, isn’t any different.
For the purpose of this article, discrimination will be defi ned “as a showing of partiality or prejudice in treatment, action, or policies directed against the welfare of minority groups.”1 Discrimination can happen anywhere a power imbalance exists between groups of people, such as in education, in social and political contexts, and even health care. In particular, “discrimination in the health sector is disturbing as it violates the basic principles articulated by care providers.”1 Generally, nurses experience discrimination based on their gender, race, lifestyle, and physical disability. In nursing, discrimination and oppression have lead to lower salaries, hostility from colleagues in the workplace, and unequal access to professional development training programs and career advancement opportunities.
Oppression, like discrimination, involves structural limitations—imbalances and inequities across groups causing constraints not only in the physical environment, but also in social relations, economic status, and political situation.2 When discrimination against a group of people is encouraged and consistently exercised by those in power, it causes unequal access to opportunities, thus leading to oppression. As power structures in society become more established, oppression becomes the norm. Thus, oppression occurs today not because society actively seeks to disempower some groups of people, “but rather because of the effects of societal norms, laws, and unchallenged assumptions.”3
In health care, a cultural imperialism exists such that the medical model—the physicians’ practices, views, values, and beliefs—is the dominant culture and the established norm. Nursing, as “the other group,” can be “viewed as both different and invisible and is devalued and objectifi ed by the dominant group.”4 Though times have changed, nurses continue to be an oppressed group as they have experienced repeated, widespread, and systematic injustice under a patriarchal system by physicians, administrators, and marginalized nurse managers.4,5 The forms of discrimination and oppression, as experienced by nurses within the profession and the health care sector, have been documented and analyzed below, specifi cally, gender discrimination, racial discrimination, lifestyle discrimination, and discrimination based on disability. In addition, this article will take a closer look at horizontal violence, an expression of oppressed group behavior evolving from years of oppression, fi nding implications for nurse leaders to empower nurses and nursing students.
Nursing in a male-dominated world
From a global perspective, nursing has been regarded as an oppressed profession, largely due to the fact that it is female dominated.6 Various patriarchal cultures around the world condone the unequal power relationships between men and women, favoring men.7 This gendered hierarchy of women in subordinate roles emphasizes male domination and marginalization of women in society.8 Historically, before the late 19th century, women who provided nursing care were either nuns or domestic servants. “Nursing was then an unskilled occupation, poorly paid, and disreputable,” a position held only by women of low social status.9
The unequal power balance between physicians and nurses has resulted in nurses keeping their voices silent while in the workplace. Nurses may not challenge physicians in the workplace, fearing confl ict, stress, or reprisal.8 This could become problematic, especially if nurses have concerns about harm to the patients. Churchman and Doherty conducted a qualitative research study in the United Kingdom on nurses’ views of challenging doctors’ practice in an acute hospital and found nurses still lack the confi dence to question doctors’ decisions. When dissent was warranted, nurses played the “doctor-nurse game” to appease the physicians; this “game” refers to the hidden manner in which nurses have infl uenced physicians’ decision making by providing information and making suggestions about patient care, without appearing to undermine a physician’s status.8
Gender discrimination
Gender discrimination refers to distinction, exclusion, or restriction made based on socially constructed gender roles and norms, those that prevent individuals from experiencing full human rights.10 In reviewing the literature, two types of gender discrimination in nursing were found. The fi rst type refers to the preferential treatment of men in nursing— specifi cally with regards to career advancements—and the second type refers to society’s view of male nurses, potentially leading to unequal educational opportunities for males.1,10
In a profession dominated by women, it seems puzzling that female nurses still face gender discrimination. In 2005, Statistics Canada reported there were 314,900 regulated nurses (which consists of registered nurses and registered practical nurses) in the country, and of these, 94.5% were women.11 This data is comparable to 2005 U.S. data, where roughly 5.9% of the nursing workforce is comprised of men. The proportion of male nurses in Australia and the United Kingdom is slightly higher at 7.2% and 10.1%, respectively.12 Indeed there is a signifi cantly lower number of men in nursing, yet they are disproportionately represented in management such that in the United Kingdom, approximately 45% of those in senior management positions and higher education courses are male nurses.1 Additionally, male nurses are reportedly higher paid and move directly into middle and upper remuneration brackets faster than their female counterparts.1,13
A survey conducted by Hader that collected information from over 1,500 nurse leaders from New Zealand, Canada, China, and Saudi Arabia revealed male nurses move into management positions at a younger age and faster than their female counterparts. The other type of gender discrimination in nursing involves the negative effeminate stereotypes society associates with male nurses. This may be because society as a whole views nursing as women’s work because it is a caring profession.14 The media’s portrayal of male nurses and physicians seems to be an accurate refl ection of society’s views of men in health care as well. In movies like Meet the Parents, in which the lead actor plays a male nurse, the character is perceived as less masculine. Conversely, male physicians are generally portrayed as confi dent and masculine in the media. There also tends to be a patriarchal stereotype in health care, where the physicians are viewed as leaders and nurses are handmaidens carrying out their orders.15 Male nurses may experience gender bias at work from their patients and colleagues or through social stereotypes that question the masculinity of men entering the nursing profession.16 Such stereotyping has lead to poor recruitment of males into nursing, as well as unequal access of male nurses in their training and education.
Gender discrimination towards male nurses can also lead to unequal access during nurse education and training. Kouta and Kaite reported male nurses were prohibited from training in obstetrics and gynecology due to gender bias, causing male and female nursing students to have different learning experiences.10 Similarly, Patterson and Morin found male nursing students were unable to participate in providing postpartum care to maternal patients.17 Other factors, such as the very low proportion of male faculty in nursing and limited opportunities to work with male nurses in clinical settings, were also reported to have contributed to the male nursing students’ perception of gender bias during their nurse training.10 Interestingly, a study conducted by Olawaiye, Shelton, and Withiam explored gender bias toward male resident training in vaginal deliveries at a community hospital, and the researchers found no difference between male and female residents’ experience.18
Racial discrimination
Society has used race to create distinctions between people based on visible or other shared characteristics such as skin color or religious affi liations.19 Racial discrimination involves hostility towards members of particular racial groups enacted within organizations and institutions. In health care and nursing, racial discrimination still exist. In 2002, The American Nurses Association published a study conducted by Bessent, who surveyed more than 5,000 nurses, including African Americans, Hispanics, Asians, American Indians, and Caucasians. The survey found minority nurses experience barriers to their progress in nursing, and “59% of African American respondents, 53% of Asian respondents, and 46% of Hispanic respondents” reported feeling they were denied a promotion because of their ethnicity.20 Results from the survey also identifi ed barriers to career advancements, which include educational, institutional, personal, and professional obstacles. This data is consistent with data from the United Kingdom. For example, in Kingma’s 1999 study, black nurses in the United Kingdom with matching qualifi cations and experience lagged at least fi ve years behind in career progression compared with their white counterparts.1 In addition, blacks and minority ethnic groups in the United Kingdom are underrepresented in nurse manager and senior leadership positions.21 Similarly in the United States, Hispanics and African Americans are underrepresented in nursing leadership positions when compared to the general population.13
Race also plays a role in nurses’ salaries in the United States. For example, among nurses earning more than $120,000 per year, more than 90% of these nurses are Caucasians; 4% are black, and only 2% are Hispanics or Asians.13
The Royal College of Nursing in the United Kingdom has acknowledged that institutional racism occurs in nursing.22,23 Nurses in the United Kingdom described their experiences with racism as being negatively stereotyped by colleagues and the public, having patients reject their care, and being excluded from various opportunities.23 In addition, research from Aston Business School and Lancaster University Management School in the United Kingdom both found National Health Service (NHS) organizations where bullied and discriminated against ethnic minority nursing staff reported poor staff engagement and patient experience. Nurses belonging to ethnic minority groups in the United Kingdom also reported unfair treatment in the workplace, such as being prevented from attending further training programs that their Caucasian colleagues would have otherwise been encouraged to partake in.24
Literature on racial discrimination in the United Kingdom and United States demonstrate that nurses belonging to ethnic minority groups do not have equal access to job opportunities, career advancements, and training programs when compared to their white counterparts.
Lifestyle discrimination
Society’s prevailing heterocentric view has led to oppression and discrimination towards the lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community. Consequently, LGBTQ nurses may be perceived as “invisible” members of the nursing workforce, ignored and underrepresented in professional organizations and pathologized in the nursing curriculum.25 This is supported by the fact that there is limited empirical literature on the experiences of LGBTQ nurses in the workplace.25,26
Heterosexual nurses’ negative attitudes towards LGBTQ nurses are referred to as homophobia, biphobia, and transphobia.25 LGTBQ nurses also experience discrimination from societal discourse and predominating heterocentric institutional values, beliefs, and practices. A study conducted in the United States by Randall as cited in Eliason et al., surveyed over 100 nurse educators and found 10% of the respondents thought lesbians should not be allowed to teach in schools of nursing. These negative attitudes towards LGBTQ nurses have led nurses to have concerns about disclosing their sexuality to coworkers.
A study conducted by Eliason et al. explored the experiences of 261 LGBTQ nurses in the workplace and found 22% of participants work in LGBTQ-unfriendly environments. Nurses in the study described experiences ranging from harassment and derogatory statements from colleagues about their sexual orientation to job losses or not having their contract renewed despite years of excellent performance reviews.25
Another study conducted by Giddings and Smith explored the experiences of lesbian women in the profession of nursing. Many of the participants experienced homophobic reactions not only from heterosexual colleagues but also from “closeted” lesbian colleagues. One participant argued that lesbian nursing students chose to not disclose their sexual orientation to their faculty and classmates for fear of discrimination or being labeled as deviant. None of the participants discussed experiencing discrimination for career advancement because of their sexual orientation.
Disability discrimination
Having a disability presents many challenges for nurses and nursing students. There have been reported situations in which HIV-positive nursing students or nurses were expelled from their programs or terminated from their employment.1 The U.S. Equal Employment Opportunity Commission and the Americans with Disability Act defi ne disability as a “physical or mental impairment that substantially limits one or more of the major life activities,” including having a record and being regarded as having such an impairment. As recorded, the two major types of disabilities that put nurses in a disadvantaged position are learning disabilities and physical disabilities.
Research has revealed that nurses with physical disabilities sometimes feel compelled to leave the profession for fear of not “pulling their weight” or putting patients at risk. In a study conducted by Neal- Boylan that explored the exper ience of nurses and phys i c i ans with a physical and sensory disability, it was found that the nurses’ employment agencies did very little to accommodate the nurses’ disabilities or to retain them. In addition, the nurses reported the need to hide their disability from their patients and colleagues. Interestingly, both the nurses and physicians reported their colleagues seemed to have less compassion for them with regards to their disabilities, despite having a professional understanding of how the disability could be limiting them.27 Disability also narrows and alters career choices and trajectories for nurses with disabilities.
Nursing students with a learning disability may not have equal access to training programs that accommodate their learning needs. Although it is illegal for nursing schools to deny admission to an applicant because of a learning disability, nurse educators and mentors do not always have adequate knowledge on how to fully support the learning needs of students with a learning disability.28 Once admitted to the program, it is the student’s responsibility to inform the school of any disability and request accommodations.29 Yet, many students with a learning disability do not disclose it to their faculty for fear of being rejected or discriminated against.30 Generally, efforts to meet the needs of students with disabilities include extra time to complete examinations, courses, or the program as a whole.29 Modifying courses to best meet the learning style of the student is not always done. Studies have suggested that nursing students with a disability experience stigmatized and prejudiced attitudes from staff as well.30
Oppressed group behaviors in nursing
According to Freire, there are five salient dimensions of oppressed group behaviors: “assimilation, marginalization, self-hatred and low-self esteem, submissive-aggressive syndrome, and horizontal violence.”31 Oppressed groups assimilate the values and norms of the dominant group, believing they will gain acceptance, recognition, and power if they become more like the oppressor.31 For example, nurse leaders tend to adopt the values and norms of the dominant group in an attempt to achieve those goals. Successful assimilators, such as nurse managers and administrators, become marginalized from both groups, as they still exhibit behaviors of the oppressed group and therefore are not able to become full members of the oppressor group. The oppressed group develops low self-esteem and self-hatred as they continue to internalize the values of the oppressor group. Submissive-aggression syndrome occurs when the oppressed group feels anger towards the oppressor group but is unable to express those thoughts and feelings freely for fear of reprimand. This occurs when nurses constantly complain about hospital policies or the physicians they work with, but rarely confront the oppressors. The nurses, feeling powerless but still attempting to exert some form of control, engage in destructive behaviors toward one another, such as bullying and sabotage. This phenomenon is called horizontal violence, an issue that plagues nursing today.
The submissive behaviors of nurses towards hospital administrators and physicians have evolved throughout history, leading to horizontal violence. These acts do not only involve overt behaviors such as physical violence, but include subtle behaviors such as gossiping, eye rolling, belittling or criticizing colleagues in front of others, and isolating colleagues during group activities.5 Horizontal violence is prevalent in nursing, and it negatively affects not only nursing recruitment and retention, but also patient outcomes.32
Implications for nursing
There are many factors that contribute to oppression in nursing. Widespread change is needed in nursing, in the health care system, and in society at large to curb the problem. Empowering each nurse is a crucial starting point. For nurses, change must start with working toward developing the critical consciousness of nurses and other health care professionals. This would involve allowing issues to be brought to the forefront, refl ecting on the basis of generalizations and biases that inform thoughts and actions, and openly examining them.19 In this manner, individuals develop critically refl ective skills and consciousness begins by becoming aware of the extent to which they hold power, knowledge, and privilege in relation to other groups.19 Nurse educators can help their students develop a critical awareness by embedding refl ective exercises in the nursing curriculum, allowing the learner to engage in praxis.
To help decrease nursing bias, “nursing faculty members need to become sensitive to subtle incidents of gender bias that may have a signifi cant impact on student learning and success.” Nursing faculty must also become aware of male nurses’ contributions to the profession while evaluating texts, courses, and the curriculum for feminine nursing stereotypes.33
To foster an understanding of the unique expertise and scopes of practice of different health professions—of how individual professions fi t within the trajectory of patient care—inter-professional education and collaboration must occur.34 This is important to foster trust, respect, openness, and a positive attitude to other health care professions. Faculty in health care and hospital administrators must work together to create an environment that is supportive of inter-professional collaboration and education.
Within the health care setting, health professionals, including physicians, nurses, allied health, managers, and hospital administrators, must come together and develop policies to address discrimination, and eliminate abuse and disrespectful behavior in the workplace.5 Workplace diversity councils must be established to help support minority groups. There is also a need to develop programs to help minority nurses learn how to overcome discrimination “in the workplace, develop leadership skills that can open doors to career mobility, and negotiate with their employers to achieve more equitable treatment.”20 Health care leaders, including nursing leadership, must become more aware of the various resources available in the workplace and community to support nurses who are experiencing marginalization.30 Training programs need to be established to allow staff to become more aware of wider systemic issues (such as gender bias, racism, LGBTQ issues, and disabilities) that contribute to discriminatory practices towards various nursing groups.
From a research perspective, there is a need to conduct research that describes the marginalization of certain nursing groups and its impact on nursing recruitment, staff retention, and patient outcomes. To highlight the unique contribution of nursing, it is important to conduct research on nursing-sensitive patient outcomes. Studies also need to be developed to further examine how nurses view and understand oppression and their beliefs on the most effective ways to address this issue.4
Lastly, nurses need to resist the oppressive status quo that is pervasive in workplace cultures.4 If individual nurses question and resist the status quo, then, as a group, their voices become stronger
References
M. Kingma, “Discrimination in nursing,” International Nursing Review, 46 (1999), 87–90.
P. Stevens and J. Hall, “Applying critical theories to nursing in communities,” Public Health Nursing, 9 (1992), 2–9.
R. Northway, “Disability and oppression: some implications for nurses and nursing,” Journal of Advanced Nursing, 26 (1997), 736–743.
D. Dong and B. Temple, “Oppression: a concept analysis and implications for nurses and nursing,” Nursing Forum, 46 (2001), 169–176.
J. Longo and R.O. Sherman, “Leveling horizontal violence,” Nursing Management, 38 (2007), 34–37; 50–51.
M.J. Birks, Y. Chapman, and K. Francis, “Women and nursing in Malaysia,” Journal of Transcultural Nursing, 20 (2009), 116–123.
World Health Organization, “Health Topics: Women’s Health,” (2010), www.who.int/topics/womens_health/en/.
J. Churchman and C. Doherty, “Nurses’ views on challenging doctors’ practice in an acute hospital,” Nursing Standard, 24 (2010), 42–47.
L. McDonald, Florence Nightingale at First Hand, York Road, London: 2010 Continuum UK.
C. Kouta and C.P. Kaite, “Gender discrimination and nursing: A literature review,” Journal of Professional Nursing, 27 (2010), 59–63.
Statistics Canada, “National survey of the work and health of nurses,”
J. Daly, S. Speedy, and D. Jackson, Contexts of Nursing (3rd ed.), 2010 Chatswood, AU: Elsevier.
R. Hader, “Nurse leaders: A closer look,” Nursing Management, 41 (2010), 25–29.
D.M. Wilson, “Meet the Men Who Dare to Care,” Johns Hopkins Nursing, 7 (2009)
K. Lunau, “The enduring stereotype of the male nurse,” Maclean’s, (2011).
BC Nurses’ Union, “Men in nursing,” (2011)
B.J. Patterson, K.H. Morin, and N. Colby, “The experience of being cared for by nursing students after giving birth.” Paper presented at NLN Education Summit, San Antonio, Texas: National League for Nursing, 2003.
A. Olawaiye, J.A. Shelton, and M. Withiam-Leitch, “Is there gender bias toward male residents in an obstetrics and gynecology training program?” Journal of Reproductive Medicine, 51 (2006), 479–483.
J.L. Johnson, J.L. Bottorff, B.A. Hilton, A.J. Browne, and S. Grewell, “Recognizing discrimination in nursing practice: fi ndings from a study of South Asian women and their health care providers in British Columbia,” The Canadian Nurse, 98 (2002), 1–6
H. Bessent, (2002). Minority nurses in the new century. Washington, D.C.: American Nurses Association.
A. Waters, “Statistics reveal that BME nurse managers are under-represented,” Nursing Standard, 26 (2011), 9; 20.
N. Lipley, “Facing inequality,” Nursing Standard, 13 (1999), 12–13.
P. Kendall-Raynor, “Action plan to support black staff as research shows racism persists,” Nursing Standard, 22 (2008), 6.
J. Myers, “Career progression is not without prejudice,” Nursing Standard, 26 (2011), 1.
M.J. Eliason, J. DeJoseph, S. Dibble, S. Deevey, and P. Chinn, “Lesbian, gay, bisexual, transgender and queer/questioning nurses’ experiences in the workplace,” Journal of Professional Nursing, 27 (2011), 237–244.
L.S. Giddings and M.C. Smith, “Stories of lesbian in/visibility in nursing,” Nursing Outlook, 49 (2001), 14–19.
L. Neal-Boylan, “An exploration and comparison of the work life experiences of registered nurses and physicians with permanent physical and/or sensory disabilities,” Rehabilitation Nursing, 37 (2012), 3–10.
S. Tee and M. Cowen, “Supporting students with disabilities— promoting understanding amongst mentors in practice,” Nurse Education in Practice, 12 (2012), 6–10.
L. Helms, J. Jorgensenn, and M.A. Anderson, “Disability law and nursing education: An update,” Journal of Professional Nursing, 22 (2006), 190–196.
D.J. Wright and V. Eathorne, “Supporting students with disabilities,” Nursing Standard, 18 (2003), 37–42.
L.K. Matheson and K. Bobay, “Validation of oppressed group behaviors in nursing,” Journal of Professional Nursing, 23 (2007), 226–234.
G. Corbin and C. Dumont, “Defeating horizontal violence in the emergency department,” American Nurse Today, 6 (2011), www.americannursetoday.com/article.aspx?id=8314&fid=8276.
A.S. Anthony, “Gender bias and discrimination in nursing education. Can we change it?” Nurse Educator, 29 (2004), 121–125.
Nursing students with disabilities are increasing in number throughout the United States, thanks in part to the passage of the Americans with Disabilities Act (ADA) in 1990.1 Although exact numbers are unknown, anecdotal reports of students with a wide variety of disabilities, including hearing loss, vision loss, paralysis, chronic illness, learning disabilities and mental illness, are documented in the nursing literature.2-10
The ADA, like the earlier Rehabilitation Act of 1973, was intended to level the playing field. The general mandate of the ADA is for students with disabilities to have the same access to educational programs as students without disabilities. But even though the ADA has been the law of the land for 15 years, many nursing schools continue to struggle with issues relating to admissions policies for students with disabilities, such as core performance standards, essential functions and providing accommodations.
Under the law, entrance requirements cannot include any criteria that would screen or appear to screen for disabilities. The ADA also mandates that educational institutions provide “reasonable accommodation” to individuals with disabilities.
Accommodation only ensures equal access to education; it is not a guarantee of success.
In the case of nursing students, criteria that would identify disabilities prior to admission are not only in violation of the ADA, they have no legitimate purpose. It is unfair to evaluate a nursing applicant in one brief session on his or her ability to perform skills that are intended to be developed over several years. Yet this is precisely what is happening today at all too many of the nation’s schools of nursing.
Jumping to Conclusions
A number of research studies have shown that when nursing educators find themselves caught between the legal requirements of admitting a student with a disability and their perceptions of what it takes to be a safe and competent nurse, the latter concerns often tip the scales toward discriminatory pre-judging of students. Additionally, when administrators and staff nurses are notified that a student with a disability will be part of a clinical group or will require accommodations, they often voice concerns and hold preconceived notions of success or failure before the student even steps onto their floor.
One study found that nearly 60% of nurse educators making admissions decisions “preferred” to assess the applicant’s disability and need for accommodation prior to making a decision as to whether the accommodations were viable or could be provided.11 This is in direct conflict with the mandate of the ADA. Students must be admitted to the program before accommodations are discussed.
The educators in this study failed to recognize that neither they nor the nursing applicant with the disability may know beforehand what accommodations will be needed. Developing accommodations is often an ongoing dynamic–a step-by-step process that evolves and changes as the student faces new experiences in the classroom and clinical settings.
One of the most commonly given reasons for denying admission to a nursing applicant with a disability is concern about patient safety. Even if the student is admitted to the program, faculty and administrators often continue to harbor these concerns. Yet a 2002 study by Sowers and Smith reports that there is no data to suggest that health care professionals with disabilities pose any greater safety risk to patients than those without a disability.12
Furthermore, in many cases nursing programs may be focusing on the physical attributes of some applicants with visible disabilities and be unaware of the “hidden” disabilities of other applicants. For example, students with undisclosed mental health issues may be a risk to patient safety but are admitted to programs without question.
Setting the Wrong Standards
Since the passage of the ADA, many nursing schools have adopted the practice of evaluating applicants with disabilities against a list of “technical standards” or “essential functions” deemed necessary for success in the program. For example, the Southern Regional Education Board’s Council on Collegiate Education for Nursing (CCEN) developed core performance standards for admission and progression, covering such areas as critical thinking, interpersonal skills, communication, mobility, motor skills, hearing, visual and tactile skills.13
In one study, eight nursing programs reported addressing essential functions by describing the physical requirements for each skill. Examples included hand washing techniques, sharps management, isolation techniques, range of motion, transfer and
computation of drug dosages and administration of medications.14
These types of guidelines were developed for nursing education programs to use in complying with the Americans with Disabilities Act. But ironically, they often have the opposite effect: Instead of eliminating barriers to admission for students with disabilities, they create new barriers.
Sowers and Smith argue that using physical attributes such as hearing, visual and communication skills as standards causes students who cannot hear, see or speak to be excluded from nursing programs. Instead, they recommend that essential functions and technical standards more appropriately focus on specific behaviors that nursing students will be expected to perform.
For example, an essential function may be “detecting a heart murmur.” A student who is hard of hearing may be able to detect a heart murmur using an amplified stethoscope and a deaf student may use a stethoscope that provides visual output. These students cannot “hear,” but they can perform the essential function with a reasonable accommodation.
When core performance standards and/or essential functions are used to make admissions decisions, it is all too easy to exclude students with disabilities by making premature assumptions about their skills. At this stage of the process it is very difficult to accurately predict the skills a student may or may not be able to achieve over time. This approach fails to level the playing field for students with disabilities, limits equal access to the educational experience and violates the Americans with Disabilities Act.
A Personal Case Study
References1. Americans with Disabilities Act (1990), Public Law, No. 101-336, 42 U.S.C. 12101 3. Chickadonz, G.H., Beach, E.K. and Fox, J.A. (1983). “Breaking Barriers: Educating a Deaf Nursing Student.” Nursing Health Care, Vol. 4, No. 6, pp. 327-333.4. Creamer, B. (2003). “Wheelchair Fails to Deter Paraplegic from Nurse’s Life.” The Honolulu Advertiser. Available at http://the.honoluluadvertiser.com/article/2003/Dec/28/ln/ln10a.html.5. Eliason, M. (1992). “Nursing Students with Learning Disabilities: Appropriate Accommodations.” Journal of Nursing Education, Vol. 31, No. 8, pp. 375-376. 6. Huyer, S. (2003). “The Gift of ADD.” Advance for Nurse Practitioners, Vol. 11, No. 4, p. 92.7. Kolanko, K. (2003). “A Collective Case Study of Nursing Students with Learning Disabilities.” Nursing Education Perspectives, Vol. 24, No. 5, pp. 251-256.8. Maheady, D. “Jumping Through Hoops, Walking on Eggshells: The Experiences of Nursing Students with Disabilities.” Journal of Nursing Education, Vol. 38, No. 4, pp. 162-170.9. Maheady, D. (2003). Nursing Students with Disabilities: Change the Course. River Edge, N.J.: Exceptional Parent Press.10. Pischke-Winn, K., Andreoli, K. and Halstead, L. (2003). Students with Disabilities: Nursing Education and Practice (Proceedings Manual). Rush University College of Nursing. Available at www.rushu.rush.edu/nursing/studisable.html. 11. Christensen, R.M. (1998). “Nurse Educators’ Attitudes Toward and Decision-Making Related to Applicants with Physical Disabilities.” Journal of Nursing Education, Vol. 37, No. 7, pp. 311-314. 12. Sowers, J.A. and Smith, M. (2002). “Disability as Difference.” Journal of Nursing Education, Vol. 41, No. 8, pp. 331-332.13. Davis, L., Bowlin, L., Futch, K.J. and Hazzard, M. (1993). The Americans with Disabilities Act: Implications for Nursing Education. Recommendations of a task force to the board of directors of the Southern Regional Education Board’s Council on Collegiate Education for Nursing (CCEN). 14. Davidson, S. (1994). “The Americans with Disabilities Act and Essential Functions in Nursing Programs.” Nurse Educator, Vol. 19, No. 2, pp. 31-34.
The following case study illustrates how putting too much emphasis on standards and functions can result in discrimination against students with disabilities. Susan Fleming, one of the authors of this article, was born without a left hand; she wears a prosthetic hand. Susan worked as a nurse’s aide in high school and was passionate in her desire to become a nurse. She completed the prerequisites and applied to a nursing program, where she was given a skills test. This test evaluated skills that a graduate nurse would be expected to perform, such as mixing IV fluids, giving injections and donning sterile gloves.
Susan was denied admission to the program because she was unable to demonstrate some of the skills on the test. She was told that she would “endanger a patient’s life.” This test was created exclusively for her and was not administered to any other applicants. This constitutes singling out of certain students for “special testing” and discriminates against applicants with disabilities.
On admission to a nursing program, most students do not yet know how to perform skills such as these using appropriate techniques. These skills are practiced in the nursing lab and in clinical settings, and are mastered over time. Some students may master these skills sooner than others. The same scenario applies to nursing students with disabilities. All students need time to practice and hone nursing skills.
Many students with disabilities are able to find accommodations that will work for their particular needs. Faculty, administrators and staff nurses cannot “assume” that a student with a disability, such as having only one hand, will be unable to achieve a particular skill. Patients with hemophilia routinely learn to start IVs on themselves quite competently with one hand.
Susan was aware of her legal rights but chose not to fight the nursing school’s decision. The lack of time, resources and energy to pursue a discrimination case in the courts is common to many students with disabilities. Often, they are driven away from nursing forever.
But Susan focused her energy on moving forward. She applied to another nursing program, where she was accepted. While in nursing school, she worked in a busy emergency room in order to gain more clinical skills. Susan was successful in her nursing program and recalls that she did not discover all of the accommodations she needed until she had almost completed the program.
The primary accommodations Susan required in nursing school were large gloves, special scissors and a hemostat. Today, she still uses these accommodations after many years of successful practice as an RN. She is able to draw blood, start IVs, work in labor and delivery, and work as the baby nurse in the OR during cesarean sections. She is a respected and valued member of the team.
An Equal Chance to Succeed
Nursing educators need to be mindful that their next star student may be a person with a disability. This case study of a student with a disability who learned to perform nursing skills over time, with a little help from reasonable accommodations, serves as an example of the resourcefulness and compensatory abilities that students with disabilities often possess.
On admission, students with disabilities should not be required to demonstrate skills that nursing students routinely demonstrate and master over time. Rather than pre-judging them, nursing educators, administrators and staff nurses should offer them a welcoming hand. We should honor the spirit and true intention of the ADA by helping these minority students become successful and productive members of the nursing profession.
Today, the career paths open to nurses are immense and wide-ranging–from floor nursing and intensive care unit nursing to telephone triage and pharmaceutical sales. In a profession that offers such a diversity of opportunities, students with disabilities can bring valuable skills to the table, such as empathy, sign language and lip reading, as well as personal experiences that both colleagues and patients can learn from.
Nursing students with disabilities need the support of the nursing “village” in order to be successful. They may “play their hand” differently, but at the end of the day they bring value to the nursing profession and to patient care. Together, we can give more of these students the chance they deserve.
In any given year, about one in five Americans is affected by a diagnosable mental illness. Our nation is also seeing a dramatic increase in the number of students with disabilities on college campuses—and especially students with so-called hidden disabilities, such as learning disabilities, attention deficit hyperactivity disorder (ADHD) and psychiatric disabilities.1
In 2002, the American College Health Association reported that 76% of students surveyed felt “overwhelmed,” while 22% were sometimes so depressed they couldn’t function.2 In a 2005 study, the prevalence of depression in a medical college was reported at 15.2%; only 26.5% of the depressed students reported having treatment.3 The effects of depression and other psychiatric disabilities in nursing students have been studied to some extent as well. However, the exact numbers of nurses and nursing students with mental illness are unknown, due to lack of research data coupled with fear of discrimination, stigma or rejection from a nursing program, state licensing board or employer if they disclose their disability.
The cost of untreated mental illness in college students is enormous. In one recent study of undergraduate students, diagnosed depression was associated with nearly a half point decrease in grade point averages; conversely, receiving treatment for depression was associated with a protective effect of approximately 0.44 points.4 In another cohort, academic impairment—manifested as absenteeism from class, decreased academic productivity and significant interpersonal problems at school—was seen in 92% of depressed students.5 Still other reports suggest that stigma resulting from society’s negative perceptions about depression and its treatment may contribute to the 30,000 suicides committed annually in the United States.6
The Decision to Disclose
If you are a current or prospective nursing student living with mental illness, one of the most important decisions you will have to make is whether or not you should disclose your disability to admissions committees, nursing program administrators, faculty members, classmates, potential employers and others. As the following examples show, there are advantages and disadvantages to “going public” with your disability.
In her 1997 autobiography An Unquiet Mind: A Memoir of Moods and Madness, Kay Redfield Jamison, a professor of psychiatry at Johns Hopkins University School of Medicine who lives with bipolar illness, contemplates disclosing her disability. “I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy and tired of acting as though I have something to hide,” she writes. “One is what one is.” Years later, Jamison admitted that while her decision to disclose her illness publicly has had consequences, she would choose to do it again.
Additional Online Resources Disability and Higher Education: Association on Higher Education and Disability (AHEAD) www.ahead.org “Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities” www.ed.gov/about/offices/list/ocr/transition.html U.S. Department of Education, Office of Civil Rights – This site explains how to report educational discrimination, access civil rights regulatory and policy documents, and request information on civil rights compliance programs. www.ed.gov/about/offices/list/ocr/index.html U.S. Department of Labor Job Accommodation Network (JAN) www.jan.wvu.edu Mental Health Advocacy Organizations: National Alliance on Mental Illness (NAMI) www.nami.org Depression and Bipolar Support Alliance www.dbsalliance.org National Alliance for Research on Schizophrenia and Depression (NARSAD) www.narsad.org Boston University Center for Psychiatric Rehabilitation www.bu.edu/cpr/ Nurses in Recovery www.brucienne.com/nir
Now consider the example of Lynne, a pre-nursing student in California who also has bipolar disorder. Because of her disability, she was initially afraid to pursue her dream of choosing nursing as a second career. She had known three health care professionals who had suffered damage to their careers as a result of employers and co-workers knowing about their mental illness. They felt they had become defined by their illnesses. A simple argument at work became suspicious hostility; an error raised questions of poor judgment, faulty cognition or side effects from medication.
With the help of family, friends, her mentor and a discussion board at ExceptionalNurse.com, an online community for nurses and nursing students with disabilities, Lynne applied to and was accepted by several nursing schools. Once at school, she found a therapist and psychiatrist, visited the campus Office of Disability Services to have documentation of her illness placed on file, and designated her academic advisor as a source of confidential support, but kept her illness a secret to all others on campus.
Several months into the school year, Lynne became increasingly aware of the distance and disconnect she felt from her classmates. She also felt that she had to leave her “real self” at the door when she entered the classroom. While assisting with on-campus activities for Mental Illness Awareness Week, she shared her frustration with a trusted professor, who encouraged her to share more of herself with others, at her own pace. A year later, Lynne enjoys planning activities with her campus mental health advocacy organization, giving talks, and participating in panel discussions about mental illness. She has also founded an informal support group for nursing students with mental health issues.
Other than being known to some people on campus as “a person with bipolar disorder,” Lynne has experienced little stigma in her nursing program. The few instances of bias she has encountered have been subtle and came from people who meant well.
For example, while discussing her history with a supportive faculty member, Lynne was told, “Oh, we’ve had people with bipolar in this program before. I’m sure you’ll do fine.” Lynne had not indicated a need for reassurance and wondered why it had so suddenly and spontaneously been offered. Another instructor suggested that Lynne lead a life full of activities because her “high mood” enabled this. Lynne asserted that, for her, hypomania was uncomfortable, frustrating and not at all productive, and that she felt her other qualities and accomplishments were being overlooked.
Tools for Wellness Your mental illness may be with you for a long time, so consider not only accepting it but making friends with it. Think of a wellness plan not as “treatment” or simply medication and therapy (which are important!) but as part of a healthy way of life. Here are some strategies that other nursing students with psychiatric disabilities have found helpful:
Develop a strong, collaborative alliance with your health care providers.
Become educated about your illness, be a proactive health care consumer and take time to educate others.
Learn good coping skills, such as healthy eating, sleeping and exercise habits.
Make social time with friends and family a priority, as well as relaxation time.
Activities or hobbies that you enjoy will give your life balance.
At home and at school, consider asking a good friend, mentor or family member to help you monitor yourself. Even those of us with the best insight may be helped by a gentle nudge and some outside perspective from someone we trust.
For students who have to finance their education by working while they attend school, flexible scheduling is helpful. However, if you find that work stress is interfering with your studies and quality of life, look into alternative sources of funding. Contact your state Office of Vocational Rehabilitation to find out about options and solutions.
Finally, be especially honest with yourself about whether or not this is really the right time for you to be in school. Will you be able to get through a long clinical day without having symptoms that affect your ability to learn or to provide safe nursing care? If you have doubts, be kind to yourself and make wellness your first priority. Nursing school will still be there for you when you are feeling healthy enough to fully benefit from the experience and give your best.
Sources of Support
Having a strong support system in place can make a world of difference. Recall the story of Lynne, who credited much of her success to her support network of health care providers, academic advisors, professors, family and friends, as well as the online networking resources she found at ExceptionalNurse.com. This nonprofit virtual community is committed to the inclusion of more people with disabilities in the nursing profession. The Web site provides contact information for more than 80 mentors, along with a wide range of other disability-related resources and information.
In addition, the online discussion board at ExceptionalNurse.com gives you the opportunity to exchange support and advice with other students and nurses who are dealing with the same issues. Here are some excerpts from recent posts:
“I’m in a BSN program now and have not disclosed my history of major depression with psychotic features. The psychotic part is controlled with meds, and for the most part, so is my mood. I am getting straight A’s in school, but I don’t know if that will be enough to convince a licensing board that I’m stable.”
“I feel your pain. I am bipolar and when I went to nursing school I was terrified that if someone found out I would be tossed out of the program. I waited until I was halfway through nursing school to disclose.”
“I know of professionals who avoid treatment to keep a diagnosis off their records. I also worry a great deal that my illness will interfere with my employment or licensure.”
“I just started nursing school, took me like two years to get in. . .I also have a panic attack disorder that I take medication for. It’s essentially under control, I certainly don’t feel I’m a danger to patients in the least, but we start clinicals next week.”
Students like these share “invisible” disabilities and need the support of the people around them—family, friends, faculty and classmates—to be successful in a nursing program. Nursing educators in particular must serve as a bridge to help students gain acceptance from patients, clinical staff and peers.7
The challenges nursing students with mental illness face are complex and lack “one size fits all” solutions. The only way the stigma will go away is if there are successful, visible role models in the profession—practicing nurses with psychiatric disabilities who are stable, responsible, pulling their own weight and letting others see that it can be done. If you believe you have what it takes to succeed, stick to your guns and fight for your right to become a nurse. Your disability gives you a unique gift of understanding and compassion, and you have an important role to play in nursing.
References:
Wolf, L.E. (2001). “College Students with ADHD and Other Hidden Disabilities: Outcomes and Interventions.” Annals of the New York Academy of Sciences, Vol. 931, pp. 385-395.
Shea, R.H. (2002). “On the Edge on Campus. The State of College Students’ Mental Health Continues to Decline. What’s the Solution?” U.S. News & World Report, Vol. 132, No. 5, pp. 56-57.
Tija, J., Givens, J.L. and Shea, J.A. (2005). “Factors Associated with Undertreatment of Medical Student Depression.” Journal of the American College of Health, Vol. 53, No. 5, pp. 219-224.
Hysenbegasi, A., Hass, S.L. and Rowland, C.R. (2005). “The Impact of Depression on the Academic Productivity of University Students.” Journal of Mental Health Policyand Economics, Vol. 8, No. 3, pp. 145-151.
Heiligenstein, E., Guenther, G., Hsu, K. and Herman, K. (1996). “Depression and Academic Impairment in College Students.” Journal of the American College of Health, Vol. 45, No. 2, pp. 59-64.
U.S. Department of Health and Human Services (1999). Mental Health: A Report of the Surgeon General.
Maheady, D. (2003). Nursing Students with Disabilities: Change the Course. Exceptional Parent Press.
Students with disabilities are increasing in number at nursing schools throughout the world. Although they may initially encounter discrimination and other obstacles, students with hearing loss, vision loss, paralysis, learning disabilities, mental illness, chronic illness, limb differences and other disabilities have been not only been admitted to nursing programs but have successfully completed them.
If you are someone who loves helping others, nursing is one of the most rewarding careers you could consider. But if you are also a person with a disability, there is important “homework” to do before you make the decision to become a nurse. Nursing is a physically and emotionally demanding educational experience and profession. As you complete your homework, make a list of the pros and cons. Your decision shouldn’t be based on what you “think” a nurse does or what you viewed on a television program. The best way to find out what nurses do is to spend some time with nurses. Learn as much as possible about a nurse’s responsibilities and the technical skills that nurses and nursing students typically perform.
You can gather this information by talking to nurses and nursing students, observing nurses at work, volunteering in a clinic or hospital, spending a day on the job with a nurse or working a part-time job in a health care facility. Doing volunteer work with a nurse at a camp for children with special needs or at a clinic for the homeless can also provide great insights. High school students should consider joining the future nurses organization at their school or taking a health occupations course and joining a chapter of the Health Occupations Students of America.
Additional information about what is involved in nursing careers can be obtained from colleges, universities, technical schools, libraries, nursing journals, nursing associations and the Internet. Some helpful Internet sites to visit include:
Discover Nursing, sponsored by Johnson & Johnson, to learn about careers in nursing (www.discovernursing.com).
ExceptionalNurse.com is a nonprofit resource network for nurses and nursing students with disabilities (www.ExceptionalNurse.com).
The Association of Medical Professionals with Hearing Losses (AMPHL), www.AMPHL.org, provides information, advocacy and support for individuals with hearing loss who are interested in or working in health care fields.
Begin networking with nurses, nursing students or other health care professionals who have a disability similar to yours. Ask these contacts about their experiences and about accommodations that helped them succeed. Find a nurse or student who can mentor you. Do a library search and read all you can about the experiences of other nursing students with disabilities.
Know your rights under the Americans with Disabilities Act and the Rehabilitation Act. Be knowledgeable about reasonable accommodations and the differences in legal protections for students with disabilities in high school and in college–i.e., the differences between IDEA, ADA and Section 504.
Keep abreast of new programs and developing technology, such as standing wheelchairs that will enhance mobility for nurses who use wheelchairs. Clear surgical face masks will allow a nurse to read lips when other members of the surgical team are wearing masks. (The development of clear face mask products is being monitored closely by the AMPHL.) The University of Salford, in England, opened the first nursing program for students who are deaf.
Understanding Admissions Standards
Another important part of your homework is learning about the different educational options available to prospective nursing students and about how to navigate the nursing school admissions process.
There are several different types of nursing programs offered. Registered nurses (RNs) are educated in baccalaureate degree programs (bachelor of science in nursing or BSN), two-year associate degree programs and three-year hospital diploma programs (rare in the United States). Licensed practical nurses (LPNs) are educated in technical schools and community colleges. In general, a BSN program is usually less focused on technical skills.
There are no universal standards for admission to nursing programs, and requirements under state Nursing Practice Acts can vary from state to state. Furthermore, admission decisions can differ from program to program and can be dramatically inconsistent. The same student can be rejected at one school and welcomed at another. Decisions will be made on a case-by-case basis.
Some nursing programs have technical or core performance standards. Examples may include critical thinking, interpersonal skills and communication, mobility, motor skills, hearing, visual and tactile skills. Other programs may have more specific standards, such as being able to lift 25 pounds, physical ability to perform CPR, hearing ability to understand normal speech without viewing the speaker’s face, and manual dexterity to draw up solutions in a syringe.
It is important to recognize that even though you may have a career goal of working in an area of nursing that does not require direct patient care–such as case management, research or teaching–you must still complete nursing courses that will require you to demonstrate a wide range of technical skills, including some that you may not plan to use after you graduate.
If you will need accommodations for your disability in nursing school–such as special equipment, a sign language interpreter, books on audiotape or someone to take notes for you–you will need to provide documentation from your physician, audiologist, psychologist or other health care professional.
Above all, be prepared, be prepared and be prepared. Anticipate a wide range of responses to your disability from administrators, faculty, other students and patients. To deny that you may meet with a negative attitude or response isn’t being fair to yourself or realistic. The important thing is to move forward with your head held high.
Rehearse Your Responses
Mentally rehearse responses to questions you may be asked during nursing school admissions interviews. Always focus on your positive attributes, previous accomplishments and life experiences. Be professional and enthusiastic. Practice interviewing by having someone role-play with you.
You may be asked about how you will perform technical skills with or without accommodations. Some skills you may not be familiar with. Be honest in your responses. Keep the following examples of questions and answers in mind as you plan for interviews.
A student who uses a wheelchair might be asked, “How will you perform CPR?” Sample answer: “First, I will call for help, which is the first recommendation of the American Heart Association when working with adults. Then, I will get up out of my wheelchair. It’s not something that I use all the time; in an emergency like CPR, I would not use the wheelchair.”
A student with one hand might be asked, “How will you give an injection?” Sample answer: “I have developed excellent compensatory abilities and can be creative when learning new skills. I learned to tie my shoes with one hand when I was four years old. When I am required to learn or demonstrate how to give an injection, I will seek extra assistance from the laboratory instructor and practice different methods.”
A student with low vision might be asked, “How will you read a medical chart?” Sample answer: “I will use an optical reading aid.”
A student with a back injury and lifting restrictions might be asked, “How will you make a bed or turn a patient in bed?” Sample answer: “I will ask a colleague/peer for help. In return, I will negotiate work that I can do to help my colleague/peer out.”
A student with hearing loss might be asked, “How will you hear a patient’s beeping monitor?” Sample answer: “I’ve never worked in a hospital. I don’t know if I will be able to hear the monitors. I may need assistive technology that will activate my vibrating pager when a monitor beeps.”
A student with hearing loss may also be asked, “Will you be able to hear the sound of a needle penetrating a patient’s skin?” Answer: “No, I won’t be able to.” (You may be asked this type of question to see if you will respond honestly.)
These examples are not meant to be verbatim responses that applicants should use, unless the response is appropriate. They are included simply as examples of answers that are honest and show that the applicant has researched or thought about the topic.
Go For It!
The future promises to find more and more nurses with disabilities working successfully in this exciting and fulfilling profession. Nurses can practice in a wide variety of settings, such as telephone triage, nursing education, home care, legal nurse consulting, case management, hospital nursing, school nursing, camp nursing, travel nursing, parish nursing, research and more. If you know in your heart that nursing is what you want to do, then do your homework…and go for it!
Today’s nursing workforce needs practitioners from a diverse range of cultures, backgrounds and life experiences to meet the needs of an increasingly diverse patient population, both in the U.S. and around the world. We need you in the ranks of nursing professionals, where you will be a vital part of the health care team. Through your unique contributions and strengths, you will enrich patient care, share your gifts and experiences, and add greater harmony to our profession.
References
1. Bueche, M.N, and Haxton, D. (1983). “The Student with a Hearing Loss: Coping Strategies.” Nurse Educator, Vol. 8, No. 4, pp. 7-11.
2. Chickadonz, G.H., Beach, E.K., and Fox, J.A. (1983). “Breaking Barriers: Educating a Deaf Nursing Student.” Nursing Health Care, Vol. 4, No. 6, pp. 327-333.
3. Creamer, B. (2003). “Wheelchair Fails to Deter Paraplegic from Nurse’s Life.” The Honolulu Advertiser. Available at http://the.honoluluadvertiser.com/article/2003/Dec/28/ln/ln10a.html.
4. Eliason, M. (1992). “Nursing Students with Learning Disabilities: Appropriate Accommodations.” Journal of Nursing Education, Vol. 31, No. 8, pp. 375-376.
5. Huyer, S. (2003). “The Gift of ADD.” Advance for Nurse Practitioners, Vol. 11, No. 4, p. 92.
6. Kolanko, K. (2003). “A Collective Case Study of Nursing Students with Learning Disabilities.” Nursing Education Perspectives, Vol. 24, No. 5, pp. 251-256.
7. Maheady, D. (1999). “Jumping Through Hoops, Walking on Eggshells: The Experiences of Nursing Students with Disabilities.” Journal of Nursing Education, Vol. 38, No. 4, pp. 162-170.
8. Pischke-Winn, K., Andreoli, K., and Halstead, L. (2003). Students with Disabilities: Nursing Education and Practice (Proceedings Manual). Rush University College of Nursing.
9. Americans with Disabilities Act (1990), Public Law, No. 101-336, 42 U.S.C. 12101.
10. Matt, S.B. (2003). “Reasonable Accommodation: What Does the Law Really Require?” Journal of the Association of Medical Professionals with Hearing Losses, Vol. 1, No. 3.
When her third child, Ian, was a baby, Zenora Thompson knew something was different. At first, Ian mirrored his talkative family and verbalized normally. But, suddenly, he stopped talking completely and became fretful.
“Nothing would satisfy him,” says Thompson, who works as a nurse in Ohio.
“He would cry at everything, and wouldn’t ever rest. He would just collapse when he went to bed.”
When Thompson took Ian to the pediatrician’s office, her doctor said she was worrying too much and comparing Ian to her other children. The doctor recommended Thompson give her son more time to develop. But nothing changed, so Thompson brought Ian back to the pediatrician. “Just to appease me, she finally ran some structural tests done for issues with his ears and things, and it came back no problems,” says Thompson. For over a year her doctor told her she was overreacting.
When Ian was two years old, Thompson knew her son had a serious behavioral problem. She took him to a psychologist, who told her Ian had symptoms related to autism, but wouldn’t diagnose him yet. Most children are not diagnosed with autism until two years old.
Thompson took her son to a special needs program at his preschool. After sharing the psychologist’s findings with her pediatrician, they made an evaluation that would eventually develop into a diagnosis for autism. “From day one I learned to pick my battles,” Thompson says.
The Thompson story unfolded during the 1980s, when the autism ratio was much lower. According to studies conducted at the time, 0.3–0.4 per 1,000 American children were diagnosed, according to the Journal of the American Medical Association. There weren’t many medical resources, and Thompson was handed a book that dated back to the 1930s to consult for advice and research. This book associated autism with “cold mothers,” blaming them for the disorder in their children.
“At that time I just cried,” Thompson says. “I thought there wasn’t a lot of hope for my child.” People told her she might have to institutionalize her son. “Thank God now it’s different.”
Yet, even in the 1990s when Ian was enrolled in a Cleveland school for special needs children, his medical care was lacking. “I changed my son’s pediatrician, and she said when she met him for the first time, ‘Can’t you control this child?'” Right then, Thompson told her, “If you’re going to treat my son and this population, you have to be aware of what’s going on with him.”
Despite more prevalent resources and an ongoing national dialogue concerning children with autism, research indicates that many of these resources may still be missing from minority communities, particularly among African Americans.
According to a study conducted in Atlanta between 2000 and 2006 by the National Center on Birth Defects and Development Disabilities at the Centers for Disease Control and Prevention, non-Hispanic black (NHB) children were less likely than non-Hispanic white (NHW) children to be identified with less severe autism spectrum disorders (ASDs).
“While the overall prevalence of ASD was indeed lower for NHB children in all years that we examined, among those children who had been identified, diagnoses in NHB children were more likely to be those generally associated with a higher level of severity,” said Laura A. Schieve, Ph.D., an epidemiologist and one of the principal investigators of the study. “In comparison, NHW children had a wider range of all ASD subtypes identified.”
The conclusion of the research found an “under-identification” of ASDs in non-Hispanic black children. “If the ASD prevalence was truly lower in NHB children, we would expect to see that they had a similar distribution of types of ASD as NHW children,” Schieve says. She is also one of the principal investigators with the Study to Explore Early Development (SEED), a multisite case control study of autism spectrum disorders in U.S. children.
“We can’t give [this population] enough information, and before you know it, a child where they needed minimal intervention now needs maximum intervention because they are misdiagnosed,” says Thompson.
In 2002 white children were diagnosed, on average, at 6.3 years old, versus black children, who were diagnosed at an average 7.9 years old, according to a study conducted in Philadelphia by the University of Pennsylvania. David Mandell, Associate Director for the Center for Autism Research at the Children’s Hospital of Philadelphia and one of the authors of the study, concluded that these disparities might exist as a result of a parent’s interpretations of symptoms. “There may be cultural differences in how the behavior of children with autism is viewed or awareness of what these symptoms mean. More likely, there may be challenges to communication between parents and the clinicians who are doing the diagnosing.”
In the UPenn study, black children also spent more time in treatment with a physician before receiving an official diagnosis. When children were diagnosed, NHB children were also more likely than NHWs to be misdiagnosed with conduct disorder and adjustment disorder, while they were 2.6 times less likely to receive an autism diagnosis than non-Hispanic white children.1 Mandell said the most important areas where a misdiagnosis might affect a child with ASD is “mistreatment, especially with medications, and lack of appropriate intervention.”
According to a 2007 National Early Intervention Longitudinal Study, children with ASD have shown better prognosis with early diagnosis and intervention. Unfortunately, minority families at lower income or education levels were less likely to enter early intervention therapy.2 Under-identification of ASDs in non-Hispanic black children could affect the child’s developmental progress by limiting their access to care. If a child is diagnosed under three years old, they may qualify under the Individuals with Disabilities Education Act for early intervention services and evaluations.
“While early intervention is extremely important, intervention at any age can be helpful.” Schieve says. Developmental screenings are short tests used to determine if children are learning basic skills when they should be, or if they might have delays. Schieve says all children should be screened for developmental delays and disabilities during regular well-child doctor visits at nine, 18, and 24–30 months. Additional screenings might be needed if a child has high risk for developmental problems due to preterm birth, low birth weight, or other reasons. In addition, all children should be screened specifically for ASDs during regular well-child doctor visits at 18 and 24 months. Yet another screening might be needed if a child is at high risk for ASDs (e.g., they have a sister, brother, or other family member with an ASD) or if behaviors sometimes associated with ASDs are present.
For the Thompson family, who had few resources to turn to when Ian, now 22 years old, was growing up, intervention took some creativity. Their first area of focus was building a support system within their own family.
Make a Difference BY WANDA BROWN You can overturn disparities and help people with autism reach their full potential by taking six powerful steps: 1 Be persistent. Parents and caregivers must be persistent to get health care providers to listen and act in response to your concerns. 2 Know their rights. Learn about the federal special education laws and state regulations that exist to ensure children with a disability receive Individualized Education Plans and related services they can benefit from in the least restrictive environment. 3 Seek help. There are advocacy groups and educational advocates accessible to help you get a “free appropriate public education” that every child with autism is legally entitled to. Access any needed support programs and services provided by your state. 4 Join a national autism organization. There is power in numbers. Your voice can and will be heard within a powerful group message. 5 Get involved. Attend local support group meetings to learn about issues important to persons with autism and their families, and what steps are necessary to address them. Start networking with others. 6 Take action! Write or call on local and congressional lawmakers to report your issues and concerns. Help them understand how autism affects children and their families. Wanda Brown of ASD Concepts, LLC, is a wife, mother, grandmother, presenter at parent support groups, member of autism support groups and national autism organizations, former legal assistant, service coordinator, and board member to nonprofit organizations and autism advisory groups. She has appeared on Cable 6 TV, XM Radio One, Tavis Smiley Radio, CNN Radio, WDIG, and KCSN Radio.
“Right away when I came home and told [his siblings] he was different, and asked them how they were going to help their little brother, they were my biggest supporters,” Thompson says. Ian’s brother offered to teach him sports, while his sister helped him with getting dressed and hygiene. Ian’s father focused on verbal and social interactions; consequently, Ian is the most verbal with his father.
The Thompson family also found their church to be more supportive than expected. In their religious community, autistic people were not always allowed to attend services because their condition was “often looked on as possession,” says Thompson. Today, close friends of the family are as supportive as they can be, but socializing is still challenging for Ian because he is so unwilling to break from routine and doesn’t trust many people.
The most difficult moments with Ian happen in public. “Going to the mall I want to put a T-shirt on my son that says ‘I’m not bad, I’m just autistic,'” said Thompson. “Some days you’re up to fight those battles and other days you just aren’t up to it. I learned to pick my battles and chose the ones that would impact change.”
Ian was fortunate to enroll in a special needs preschool as soon as he was diagnosed. According to a 2002 study on Racial Inequality in Special Education, there is a lack of early intervention for minority children, including “inadequate services, low-quality curriculum and instruction, unnecessary isolation from their nondisabled peers, and hardship.”3 The study concluded that these factors might exacerbate learning and behavioral problems in minority children with special needs.
As a minority nurse, Thompson wants to research the issues her son faces now as a young man with ASD. Some of Ian’s friends with ASD are currently going through difficult phases, especially those who were diagnosed later in life, she says.
One particular challenge is diet. Young adults with autism typically don’t monitor their own dietary intake. As a result, many of those who are not regularly monitored by their families suffer from hypertension and diabetes—medical issues minority communities already experience in disproportionate numbers—in addition to their ASD symptoms.
“Special needs populations are living longer,” Thompson says. “To provide them with quality and competent cultural care we have to become informed about it.”
According to a study regarding young adults with special needs, 75% of African Americans in this population are unemployed after being out of school for two years. Fortunately, Ian’s mother enrolled him in an adult activity center where small businesses send in projects for members of his team to work on. Ian works half the day, and the other half he has activities and socializes. Ian’s opportunities are in many ways due to his mother’s research and advocacy for her son. It’s another battle she does not consider over.
“There is not a lot of research on adult autism and not a lot of facts on treatments and modifications for them in adulthood,” says Thompson. “Consequently I’m back in a box again a little bit.”
References
1. Mandell, D. S., Listerud, J., Levy, S. E., and Pinto-Martin, J. A. (2002). “Race Differences in the Age at Diagnosis Among Medicaid-eligible Children with Autism.” Journal of the American Academy of Child and Adolescent Psychiatry, 41:12, 1447-53.
2. Hebbeler, K., et. al. (2007). “Early Intervention for Infants and Toddlers with Disabilities and Their Families: Participants, Services, and Outcomes.”
3. Losen, D. J., and Orfield, G. Racial Inequity in Special Education, (Cambridge, MA: Harvard Education Press, 2002).
