The dictionary defines ignorance as a state in which one lacks knowledge, education, or awareness. As the parents or guardians of children with special health care needs, you are likely all too familiar with ignorance—your own and that of others’—as you are so often faced with new and unfamiliar things. Parents and families continue to learn so much from and about their children, but how can parents best deal with others’ ignorance concerning their children?
When it comes to understanding disabilities and differences, many people react to their own ignorance with judgment, insensitivity, and carelessness. These reactions can be quite hurtful to the person with disabilities and to their family. Other people may react with confusion, curiosity, and lots of questions. The curious reaction is usually more welcome, since it presents an opportunity to educate and create awareness.
Many parents who have struggled with both reactions suggest that it is helpful to remember 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 for others—sometimes even close friends and relatives—don’t have the same motivation or experiences 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 education to understand 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. However, when you have the time, patience, and energy, you can use questions as an opportunity to help someone learn. In these situations, you might ask your child if it’s okay to talk about her, or when possible, allow her to speak for herself. 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 an important aspect of advocacy, awareness and acceptance.
You and your child can find your own styles of dealing with ignorance. Some parents feel the need to educate 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 an opportunity to educate someone. Whatever the case may be, remember – 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 anyone an explanation.
People who are not familiar with 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. Ignorance should be replaced with education, so give your friends and family the information and pointers they need to understand your child and your life. This may help you gain their support.
You can read more about dealing with ignorance in our Stories section, where parent Tina Persels shares her experience and a few methods for facing this challenge.