How 'Forced Disclosure' Harms Disabled People
Disclosing disability status is a personal decision and process that should be honored in any context. Specifically, disability disclosure is “a complex and ongoing process requiring decisions about who should know, why they should know, how to inform, what to disclose, and when to inform.” Disclosure encompasses significant implications when considering ableism/stigma, autonomy and consent, and confidentiality.
Disability justice activist Mia Mingus coined the term “forced intimacy,” which refers to the way disabled people are often “forced” to disclose personal details of their lives to obtain access and meet their needs “in an ableist world.” She describes:
“This often takes the form of being expected to share (very) personal information with able-bodied people to get basic access, but it also includes forced physical intimacy, especially for those of us who need physical help that often requires touching of our bodies. Forced intimacy can also include the ways that disabled people have to build and sustain emotional intimacy and relationships with someone in order to get access — to get safe, appropriate and good access.”
This model as it relates to disability disclosure analyzes it through a lens of consent, vulnerability and imbalanced systems of power. It emphasizes the exhaustion, time and labor disabled people encounter to receive access instead of confronting and changing systematic oppression. The disclosure is based on inaccessibility rather than mutual understanding, trust and balanced power. The cycle of ableism means consent and vulnerability are not choices to survive.
While some disabled people may be OK with disclosing their disability status in certain contexts, others may not. On one hand, disclosure is sometimes liberatory and used to obtain access, counter negative perceptions, ignite conversation and empowerment. On the other hand, reluctance to disclose disability may relate to stigma or internalized ableism. Other times, someone may not wish to share personal information with strangers on the basis of ableism. Regardless of the reason, it is entirely someone’s personal decision that requires no explanation (although many nondisabled people feel entitled to one).
Even more, forced disability disclosure in an ableist context can be unsafe on many levels. It may initiate discrimination, microaggressions, or targeted violence and paternalism. It is important to remember how forced disclosure can present itself and alter policies and behaviors that create it to shift this ableist dynamic toward a balanced power system of safe access. Forced disclosure, then, is one way by which privilege and oppression are maintained.
The following are examples that create “forced disclosure.”
1. “No technology” rules in classrooms and controlling the use of technology.
When classrooms have a “no technology” rule, it often reveals disabled students who receive accommodations to use certain technology devices (e.g., laptops) for notetaking, transcription, and audio-recording purposes. If the instructor states verbally or in the syllabus that only disabled students with approved accommodations are permitted to use technology devices, this approach discloses disabled students if they are seen using them without question. Additionally, it may expose disabled students to comments and questions from peers. Both examples are problematic and place disabled students in a position where their disability status and potential details of their disability are disclosed. At least for me, it is not always the fact that other people now know I am the disabled student that bothers me– it is the disrespect, lack of consent and ableism that does.
Instructors may cite distractibility as a potential concern for technology. Yet, many disabled students use certain technology devices as an empowering and necessary accessibility tool. One potential solution for distraction concerns is to split the room into “no technology” and “course-related technology” sections and to let the students choose in which section they wish to sit. That way, the access is already built into the design. Of course, it is important to emphasize that technology only be used for course-related work. Disabled students should not be put in a situation that is inaccessible or discloses their condition just because some students may misuse technology in a classroom.
2. Doctor’s notes.
Sometimes instructors or employers who request doctor’s notes also request more detail for them to deem the note “justified.” Even if the note does not reveal specific details of the disability, it can sometimes be inferred. For example, when I was discharged from the inpatient unit, the psychiatrist and social worker wrote me a letter for the dean and professor as documentation to receive an “incomplete” in a college course. While they revealed no details of my diagnoses and reasons for admission, it was evident from their signatures and credentials that I was admitted to the psychiatric unit. Requiring a doctor’s note may also exacerbate certain inequities. People who do not have access to insurance may struggle to obtain a note, for one example.
3. Invasive questions.
As in the previous point, some people may request information beyond what is necessary or feel entitled to details. It is not uncommon for disabled people to receive unwanted and invasive questions or even demands from strangers. “Were you born that way?” “Can you have sex in a wheelchair?” (yes, this question is commonly brought up to wheelchair users), and “Tell me what happened to you.”
It is OK if you feel comfortable sharing information with people. Personally, I like it when my friends show an interest in understanding my disabilities. However, there is a clear difference between rude, invasive questions and an understanding, supportive, and consenting conversation with a friend. No one is ever required to answer these questions. It is not their responsibility or obligation.
4. When someone else reveals your disability without your consent.
Sometimes, we may choose to reveal our disability status, diagnoses, or other details to people we trust and in certain contexts. However, unfortunately, this does not mean they do not share this information with other people. I recall a close friend of mine who, right in front of me, proceeded to tell a group of people about a severe paranoid-ideation episode I struggled with in the past. I later confronted the person, who apologized, but it is important to understand that disclosing personal information about disability status is never acceptable. It is also not uncommon for parents of disabled children to disclose information. If someone asks you not to disclose certain information, do not push back. Do not try to talk them out of it and give your “opinion” on why you think they should disclose.
To obtain basic access, whether it be in the workplace, school or other settings, the world often requires us to reveal our disability status in some way. For example, if someone needs captions in a school setting, and they are not provided, the inaccessibility may mean the disabled person needs to request captions via the instructor, which requires disclosure, sometimes in the middle of class. Additionally, I recall a time when I was sitting on a public subway and told that I needed to stand up to let someone else sit down because I am “young.” Yet, I cannot stand for periods of time without potential presyncope and other problems due to a condition called postural orthostatic tachycardia syndrome. My disability is not always clear by looking at me, and being “non-disabled” is presumed to be the default. Thus, the situation implied that I needed to justify why I was sitting down and could not give up my seat.
Accessibility, instead of being built into social structures and norms, often requires disabled people to disclose or justify themselves in some way. Failure to discuss how forced disclosure, ableism, and inaccessibility are interconnected and operate in the world upholds the ableist cycle. Accessibility needs to go beyond the bare minimum of compliance. It is not merely about providing accessibility so that disabled people can “join” nondisabled people. The approach should shift towards liberatory access that dismantles the privilege and barriers that were created in the first place.
Getty image by Wavebreakmedia.