Ethical Considerations for Disability Advocacy, Representation, and Access

Isabella Reyes ‘24, a 2023-24 Hackworth Fellow with the Markkula Center for Applied Ethics at Santa Clara University developed six case studies that explore how accessibility intersects with health care, education, and workplace ethics. The cases serve as a foundation for difficult dialogues, in-class discussions, or workshops. They should be used by stakeholders involved in disability advocacy, education, health care, and policy-making.

 

Case #1: Rehiring an employee after a previously undisclosed Autism Spectrum Diagnosis (ASD) and policy violation

This case was written with the help of the 2023-24 Hackworth Campus Ethics Team and members of the disabled community such as Dr. Molly King.

Case background 

Questions to consider

1. The Markkula Center offers a framework for ethical decision making. Which lens could help you come up with a solution for this case?
2. Should the company re-hire the employee?
3. If the employee were rehired, what steps should the company take to accommodate and provide additional support?
4. How would rehiring the employee affect the woman and contribute to the culture of silence around sexual assault?
5. How would Matt’s disability contribute to determining if a violation was present?
6. To what degree should company policy extend to employees in their personal time?

Ethical considerations

1. Violation of company policy
   1. Violating sexual harassment policy
   2. Upholding policies and keeping employees accountable for their actions, regardless of the circumstance
2. Balancing company policy authority with employees' personal lives
   1. Degree to which company policy should apply to employees in their personal time
3. Re-integration of an employee
4. Discriminating against disability in the workplace
   1. Previous discrimination had caused Matt to not disclose his ASD diagnosis
5. Company reputation and policies
   1. Re-hiring could impact the company’s reputation
6. Non-disclosure of medical information
   1. An individual’s right to privacy regarding their disability
7. Assessing the extent to which Matt’s diagnosis affected his discernment in the situation
8. Neurodiversity and consent
9. Maintaining a safe workplace environment
   1. It is important to ensure the woman who he made the inappropriate comment to feels safe and respected where she works

---

Case #2: Teaching consent in college to neurodiverse students

This case was written with the help of the 2023-‘24 Campus Ethics Team and members of the disabled community such as Dr. Molly King. This case is inspired in part by advocacy work and research done by fellow student Alex Coleman ‘25.

Case background

Neurodiverse college students are more than twice as likely to be assaulted than their neurotypical peers.^[1]

A university’s sexual assault prevention center provides resources for what consent looks like in social situations. However, the descriptions are vague and contain phrasing such as describing positive consent as “using physical cues to let the other person know you’re comfortable taking things to the next level.” Neurodiverse individuals cannot easily identify these cues during social interactions. The sexual assault prevention center has not properly revised their materials to be concrete and specific, yet universally applicable.

Questions to consider

1. The Care Ethics Lens may be most applicable in a case like this. You can find that lens and others on the Markkula Center framework for ethical decision making. How would the Care Ethics Lens apply to this case?
2. How can sexual assault prevention resources be written to include the neurodiverse community?
3. How do you describe nuanced cases to someone with difficulty reading social situations?
4. What kind of social cues can be easily interpreted by both neurodiverse and neurotypical students?
5. How can enthusiastic consent be communicated?
6. If you are feeling uncomfortable, what are some specific tactics to end an uncomfortable interaction?

Ethical considerations

1. Clarity and Explicitness
1. Enthusiastic consent
2. Explicit “No”s - the center could provide guidelines for the wording of an explicit “no”
2. Inclusivity in education
1. Making socio-emotional education accessible and inclusive of diverse experiences and perspectives
3. Teaching self-advocacy skills to neurodiverse individuals
1. Teaching the explicit “no”
2. Teaching relationship communication strategies to all students
4. Neurodiverse training for sexual assault counselors and advocates

---

Case #3: When is one-on-one learning more harmful than beneficial?

This case was written with the help of members of the disabled community such as Dr. Molly King and 2023-‘24 Hackworth Campus Ethics Team.

Case background

At the age of eight, Kyle demonstrates exceptional academic abilities, consistently performing at the top of his class with scores in the 100th percentile across all subjects. However, he faces challenges in social interaction with peers and struggles with sleep problems that conflict with the traditional school schedule from 8:00AM to 2:00PM. Kyle has been observed to avoid eye contact, display repetitive behaviors, and show unusual interactions with the way things sound, smell, taste, look, or feel.

His doctor has told his parents that he may be on the autism spectrum. A one-to-one learning school named Eminent Scholars specializes in personalized education for students like Kyle, offering flexibility in scheduling and tailored learning experiences. This school could accommodate Kyle's sleep issues, allowing him to attend classes later in the day and learn at his own pace, potentially covering more content than in a traditional school setting. Kyle’s parents, however, are concerned about the potential limitations in social interaction and available resources at Eminent Scholars. One-to-one learning means that Kyle would lack collaboration opportunities with peers where he could improve skills such as teamwork and communication. Decreased interaction could also lead to potential feelings of isolation.

Questions to consider

1. The Markkula Center offers a framework for ethical decision making. Which lens could help you come up with a solution for this case?
2. How might Kyle’s parents decide which education is best for their child?
3. Would Kyle miss out on opportunities to improve social interaction?
4. What experiences do Kyle’s parents want him to get out of schooling?
5. What experiences can a standard school setting provide that he would miss out on?
6. Is it a traditional school’s responsibility to provide better accommodations?

Ethical considerations

1. Importance of social skills development
2. Kyle’s well-being
1. Eminent Scholars could improve his mental health and provide better accommodations
3. Future success
1. Having a more personalized schedule could accelerate his learning
4. A school’s responsibility
5. Desensitization
1. If Kyle stays at the original school, it may set an expectation for him that he doesn't deserve accommodation and that he has to just learn to deal with his problems on his own

---

Case #4: What role do universities play in educating the whole person?

This case was written with the help of members of the disabled community such as Dr. Molly King and 2023-‘24 Hackworth Campus Ethics Team.

Case background

A university requires all enrolled students to take a diversity and inclusion course that discusses race, gender, sexuality, and class. The university's curriculum overlooks the critical nuances, experiences, and challenges faced by individuals with disabilities, inadvertently reinforcing an incomplete understanding of diversity.

Questions to consider

1. The Markkula Center offers a framework for ethical decision making. Which lens could help you come up with a solution for this case?
2. Should disability be included as a part of diversity and inclusion training?
3. What obligations do universities have regarding the education they provide students? How does the lack of knowledge on disability affect students in their future careers?
4. How does excluding disability compromise the integrity of the university’s diversity and inclusion education and mission of “educating the whole person”?
5. What stakeholders would need to be involved in making a curriculum change?
6. How can universities create a robust disability studies program without it looking performative (i.e. not just having one class as a way to “say sorry” for excluding disability studies from the broader curriculum).
7. What makes a holistic education?

Ethical considerations

1. Educating the whole person
1. Lack of representation of an aspect of diversity
2. Curriculum revisions
3. University’s diversity and inclusion claims
4. Previous history of omitting disability
5. Performative activism vs righting wrongs.

---

Case #5: Inaccessible medical equipment

This case was written with the help of members of the disabled community such as Dr. Molly King and 2023-‘24 Hackworth Campus Ethics Team.

Case background

Despite the passage of the Americans with Disabilities Act in 1990 and Section 510 of the Rehabilitation Act in 2010, health care facilities such as examination tables, weight scales, diagnostic imaging equipment, and other equipment often remain inaccessible.^[2]

A wheelchair user named Michelle comes into the clinic and is unable to move onto the exam table for the physical examination during her appointment. Due to the lack of staffing to help Michelle up on the table and time constraints, the physician decides to conduct the physical examination with the patient remaining in her wheelchair. Additionally, the physician assigned to Michelle’s care has limited training in treating patients with mobility disabilities. The physician misses a sacral ulcer on her lower back, since Michelle remains in her wheelchair. Two months later, Michelle is admitted in the hospital with a stage three decubitus ulcer, requiring wound care, IV antibiotics for bacteremia (bacteria in the blood), and consultation with surgery.  

Questions to consider

1. What steps could have been taken to prevent the patient’s negative health outcome?
2. The Markkula Center offers a framework for ethical decision making. Which lens could help you come up with a solution for this case?
3. Is the physician responsible for the patient’s negative health outcome?
4. Should policies to make all equipment accessible be decided by health care facilities or by state or federal authorities?
5. Should health care providers be required to undergo specific training in disability-inclusive health care practices to ensure competency in treating diverse patient populations?
6. What responsibilities do health care settings have to ensure that their physical infrastructure is designed to accommodate individuals with disabilities?

Ethical considerations

1. Equitable access to health care
2. Medical training

---

Case #6: Deaf patient care

This case was written with the help of members of the disabled community such as Dr. Molly King and 2023-‘24 Hackworth Campus Ethics Team.

Case background

Ali is a deaf patient who comes in for an appointment and utilizes an American Sign Language translator. There is a standard amount of time for appointments with all patients. The physician only had 20 minutes for the appointment slot. When discussing a personal matter, the patient asks the translator to step out and instead wishes to communicate using pen and paper, as Ali is embarrassed about a sensitive health concern. Due to the limited time, the physician and patient only address one of the patient’s health concerns. It took 15 minutes for the sign language interpreter to arrive and then added time for Ali to write down his health concerns. Even though Ali had already written a list of six other problems on a paper in advance, the physician advises Ali to make a follow up appointment for his other concerns. Ali leaves the clinic feeling frustrated. One of the problems that was not addressed was his shortness of breath, and three months later he suffered a heart attack—the shortness of breath was actually a cardiac ischemia.

Questions to consider

1. The Markkula Center offers a framework for ethical decision making. Which lens could help you come up with a solution for this case?
2. What can the physician and clinic do to mitigate such circumstances? Are deaf patients’ rights being violated within the health care system?
3. How should health care providers balance the need for patient confidentiality with the doctor’s ability to conduct the visit in a timely manner without the translator?
4. Should the physician have stayed overtime with the deaf patient, even though he had other patients waiting? Would this be fair to the other patients?
5. In what ways would the implementation of new policies contribute to increased accessibility in health care?

Ethical considerations

1. Patient-centered care
2. Equity in resource allocation
3. Patient autonomy and privacy

 

 

^[1] Young S, Cocallis K. A Systematic Review of the Relationship Between Neurodiversity and Psychosexual Functioning in Individuals with Autism Spectrum Disorder (ASD) or Attention-Deficit/Hyperactivity Disorder (ADHD). Neuropsychiatr Dis Treat. 2023 Jun 2;19:1379-1395. doi: 10.2147/NDT.S319980. PMID: 37287894; PMCID: PMC10243356.

^[2] Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Accessibility of Medical Diagnostic Equipment for Patients With Disability: Observations From Physicians. Arch Phys Med Rehabil. 2019 Nov;100(11):2032-2038. doi: 10.1016/j.apmr.2019.02.007. Epub 2019 Mar 25. PMID: 30922882; PMCID: PMC6761045.