When a young adult with learning disabilities (LD) leaves school and begins to experience the demands of adulthood, she faces a major decision: Whether or not to disclose her LD in a post-secondary education, training, or employment setting. In the school-age years a student with LD is typically identified formally so that appropriate instruction and services can be identified. In this environment, the complexities LD are largely understood. As a result, opportunities are rare during school years for a teenager to practice self-disclosure of her LD.
Conversely, the beyond-school years present a young person with many situations where she must decide whether or not to self-disclose her LD. Since the Individuals with Disabilities Education Act (IDEA), the mandatory federal special education law which requires the “label” of LD, no longer applies after high school, a person with LD no longer has to be identified as learning disabled if they do not want to be! The young adult with LD must grapple with two central questions: Why would I want to disclose my LD? What are the risks and benefits of that decision? If her high school has offered little transition preparation and practice in the strategies of self-disclosure of LD, a young person might feel that it’s easier just to forget about being learning disabled altogether. It might seem more convenient to think of her LD as a condition that’s only relevant until high school graduation, having little to do with her future in college, job training, or employment.
To disclose or not to disclose: that is the question
The decision about whether to disclose one’s LD merits very serious consideration. In the beyond-school world, the term “learning disabilities” is not well understood. Unfortunately, a shocking number of the public equate LD with mental retardation. Those who do understand the difference in cognitive ability between LD and mental retardation often do not understand the varied range of learning issues, such as dyslexia, attention problems, or processing disorders. To add to the confusion, since learning disabilities are invisible, the behavior of people with LD is often misinterpreted by people with whom they interact in the beyond-school world.
Before the young adult makes the decision about whether or not to disclose her LD, she must consider carefully the pros and cons. There are many reasons why a young adult might think that self-disclosure of her LD is not an option:
- Adults with LD typically recount that the stigma attached to LD during the school-age years was the most painful part of their childhood. By not disclosing one’s LD in adulthood, they hope to avoid the stigma of that label in their adult years.
- Oftentimes LD is viewed as purely an educational issue, having little to do with the adult years. In adulthood a person with LD has more freedom to pursue interests that stem from her strengths, as opposed to being forced to learn or perform school tasks that are difficult or impossible because of her LD.
- It is common for a person with LD not to understand what LD is, what her specific LD profile is, and how to explain the profile to others. (An LD profile includes such things as a person’s strengths and weaknesses in learning and performance, ways to compensate for the LD, and ways to seek or structure the school or workplace accommodations appropriate to her LD.) So, lack of general understanding of LD, and of one’s specific LD profile, is a deterrent to self-disclosure.
- Young people with LD often lack knowledge about two federal laws that can be very beneficial in their beyond-school years. In the area of employment, one needs to know the basic rights and benefits of the Americans with Disabilities Act (ADA). In the area of postsecondary education and training, Section 504 of the Rehabilitation Act can trigger accommodations for learning and testing. A young person can miss important opportunities if she does not understand the accommodations and protections offered by these laws. Unfortunately, instruction on these laws, and how they can be used effectively in the beyond-school years, is not typically included in high school transition curriculum.
Self-awareness promotes successful self-disclosure
Research supports the important roles of parents and educators in helping a young person build the foundation for successful self-disclosure during the school-age years by engaging the child in the processes of “demystification” and “reframing” of her LD (Gerber & Price, 2005). Demystification involves taking the mystery out of the term “learning disabilities” by recognizing its manifestations in daily life. Reframing is a related process in which introspection and self-reflection guide the young person to make decisions that make use of her strengths, to create a fit between her LD and a task, a job, or an environment.
Demystification and reframing of her LD allow a child or adolescent to gain authentic insights into her LD by providing a way to reflect on both achievements and setbacks associated with her LD. Over time, these insights provide a young person with knowledge of her strengths and weaknesses, and which compensations and accommodations she needs in order to perform well in school, training, or employment. Ultimately, demystification and reframing provide the wherewithal to think about her LD in real terms.
Coupled with demystification and reframing, a young person needs a clear understanding of her LD “profile” and how to adapt successfully to the variety of environments in which she must function. With this self-knowledge a person with LD learns to interpret and adjust to the demands of various employment and social situations, and when a young person decides to disclose her LD, self-knowledge about her LD will help her to communicate that information clearly and with self-assurance.
Understanding the context of self-disclosure
Self-disclosure is not an all-or-nothing process. In fact, the decision to disclose one’s LD may be based on the various contexts of adult life. For decision-making purposes, these contexts fit into two broad categories:
- Formal contexts, such as employment and education
- Informal contexts, such as those involving family, friends, community, and leisure
When a young person considers disclosure of her LD in a formal context, such as employment, or postsecondary training and/or testing, it usually involves legal protections mandated by the two federal civil rights laws mentioned earlier, the ADA and Section 504. In fact, in order to set in motion the provisions and procedures of these laws, a person must disclose her LD, usually from the very beginning of the education or employment relationship. To get the best results stemming from disclosure in these contexts, she must be constantly alert to new challenges, opportunities, and accommodations, and be prepared to advocate on her own behalf.
In informal contexts, self-disclosure is purely voluntary, and the choice about when, how, and why to disclose one’s LD is a very personal one. Unlike disclosure in the context of school and employment, when it comes to disclosing one’s disability in the contexts of family life, friendships, community activities, and leisure pursuits, there are no legal mandates and, therefore, no guarantees that people will look on LD positively or be willing to make allowances for the LD.
In some employment or social situations, a young adult might make a strategic decision to self-disclose her LD after having first established herself as a person – after a couple of months on the job, after becoming certified for CPR, or after a third date, for example. After she has some history with co-workers or friends, a young person can then introduce herself further as someone who happens to have an LD. Interestingly, in our research, preliminary reports by those who have disclosed their LD using this two-stage strategy indicate that they have experienced a greater degree of acceptance from others and fewer feelings of stigma (Gerber & Price, 2005).
Assessing risk: “potential gains” versus “acceptable losses” of self-disclosure
As mentioned earlier, a young person who consciously decides to disclose her LD in a job, education, or social setting takes a risk in doing so. While gains are possible, so, too, are losses. The ultimate question for the young adult with LD is, “What’s in it for me?” In all of these contexts some key questions can help her sort out whether self-disclosure is worth it:
- What can I potentially gain by disclosing my LD in this setting — in the short-term and long-term? (Example: Accessing accommodations that lead to better job performance, and then to job advancement.)
- What might I lose by disclosing my LD in this setting? (Example: My boss and colleagues may mistakenly perceive me as less competent than I actually am.)
- What might I lose by not disclosing my LD in this setting? (Example: When my LD affects my job performance, my boss or colleagues may perceive me as inconsistent on unreliable.)
- Are the potential losses “acceptable”? (Example: Can I live with being a team member, but never advancing to be a team leader?)
- Do potential gains of self-disclosure outweigh the “acceptable” losses? (Example: Should I just keep struggling with reading, or should I risk disclosing my dyslexia — even though my boss isn’t the most understanding person — so that I can use assistive technology to improve my work performance?)
- If I don’t disclose my LD, am I putting myself at a disadvantage by not accessing accommodations that can improve my performance? (Example: If my job is restructured, will my lack of workplace accommodations make me less able to adapt to new job demands?)
In defining “acceptable loss,” a young adult decides either consciously or unconsciously to accept the school or job situation “as is,” and not take the risk of revealing her disability and asking for accommodations, even though that might provide opportunities to improve her performance. In social situations, a decision not to disclose may mean that a young person gives up being her “true” self with others, even though doing so could lead to more satisfying relationships. Sometimes a young person defines acceptable losses “by default” because she’s not willing to acknowledge even to herself that she has an LD, or because she’s avoiding dealing with the challenges of her LD. In other cases, she makes a conscious choice not to “push the envelope” by disclosing her LD in school, training, or employment. In essence, acceptable loss is what a young person decides she can live with or accept as the status quo. To identify “potential gains,” a young person must examine her personal values, motivations, aspirations, and goals, to identify and pursue the social, learning, or employment gains that are most important to her.
The young person’s assessment of risk drives the entire decision-making process about disclosing her LD. This process is context-specific and requires the young person to consider many factors, including:
- the particular demands of the context, for example, organization, dealing with stress, computer skills, multi-tasking, or reading skills;
- the effects of her own strengths and weaknesses in the context of school, employment, or social relationships, for example, being trained in job skills or taking college classes that make the best use of her strengths
- and, most importantly, the personal characteristics of the boss, co-worker, or teacher to whom she is disclosing her LD, for example, the person’s capacity for understanding, flexibility, or professionalism.
Disclosure of one’s LD is not an end in itself. It is just the beginning of a series of challenges a young person addresses as she matures, including self-awareness, self-knowledge, self-advocacy, and self-determination. Self-disclosure is part of navigating the trials and tribulations of being an adult with learning disabilities. Meeting these challenges is part of becoming fully adult — autonomous, independent, and speaking for oneself. It is also during the beyond-school years that some of the greatest opportunities for people with learning disabilities emerge. Effective self-disclosure is one of the keys to meeting the challenges and accessing the opportunities.
- Gerber, P. J. & Price, L. A. (2005). To be or not to be LD: Self-disclosure and adults with learning disabilities.Thalamus 25:18-29.