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Handling Unawareness

What is Unawareness?

The dictionary defines unawareness as the state of being uninformed or unaware: ignorance, innocence, unfamiliarity, unconsciousness, obliviousness, nescience. As the parents or guardians of children with special health care needs, you most likely have experience with unawareness—your own and that of others—as you are so often faced with new and unfamiliar things. Parents and families learn so much from and about their children, but how can they best deal with others’ views of their children?

Educating the Public

When it comes to understanding disabilities and differences, many people respond to their own unawareness with judgment and carelessness. This can be quite hurtful to the person with disabilities and to their family. Other people may react with curiosity and lots of questions. The curious response is often more welcome, since it presents a chance to teach and create awareness.
Many parents who have struggled with both reactions suggest that it is helpful to call to mind how little they knew about disabilities before they learned from their child, doctors, therapists, and community. As parents, you learn so much so quickly because you need to, and because you love your child, but others—sometimes even close friends and family members—don’t have the same drive compelling them to learn. They may make insensitive or uneducated comments. Keep in mind that they might act this way because they do not have the knowledge you have. People need time and teaching to grasp new things, and even then it can take them a while.
This isn’t to say you should put up with just anything, and even curious questions can be frustrating, hurtful, or offensive. But, when you have the time, patience, and strength, you can use questions as a chance to help someone learn. In these cases, you might ask your child if it’s okay to talk about her, or when fitting, allow her to speak for herself. Keep in mind, your child’s privacy is important, and it is not her duty, or yours, to educate the curious. However, when the time is right, education is a vital aspect of advocacy, awareness and acceptance.

Find Your Own Style

You and your child can find your own styles of dealing with unawareness. Some parents feel the need to teach people about their child’s condition whenever possible. They may carry printed cards explaining their child's disability, and hand them to curious strangers who ask questions or make comments. Some parents have had shirts printed for their child that say things like "Autism—See the Potential" (for a child with autism) or "I can eat and sleep at the same time—can you?" (for a child who has a visible feeding tube or pump). A sense of humor is always helpful, and these things can spark a chance to teach someone. Whatever the case may be, this is your child and that is all that matters. Just because he or she may look or act different from other children, does not mean you owe an explanation.
People who are unaware of disabilities may feel overwhelmed when it comes to learning all there is to learn. Try to be patient and understanding with your friends and family, even though you and your child may be the ones who really need their patience and understanding. Unawareness should be replaced with awareness, so give your friends and family the facts they need to understand your child and your life. This may help you gain their support.
You can read more about dealing with unawareness in our Story Central section, where a parent shares her story and a few methods for facing this challenge.

Authors & Reviewers

Initial publication: January 2013; last update/revision: July 2019
Current Authors and Reviewers:
Authors: Shena McAuliffe, MFA
Tina Persels
Authoring history
2013: first version: Gina Pola-MoneyR
AAuthor; CAContributing Author; SASenior Author; RReviewer