The True Meaning of Well-Meaning Words for the Parent of Children with Hidden Disabilities

Published November 5, 2020

“Oh, he looks so normal.”

“Only the best parents get special children.”

“Don’t worry, he’ll be just fine.”

As the father of two children with special needs, I have heard phrases like these more often than I can count. The tragedy of hearing these phrases is that they have almost always been spoken by people who know my children and mean what they say with the kindest possible intent. In my experience, most people want to be kind and helpful, and when they offer up these phrases, I know deep down that they want for me, and my children, to have "happy," "normal" lives.

But here is the problem: my life, and the lives of my children, are normal. Yes, my sons, have neurological conditions, but, just like children without disabilities, my boys go to school (well, they would, if not for COVID-19), play with friends, take Tae Kwon Do, love playing video games, and sneak out of bed at night, hoping to watch fun TV with Mom and Dad.

My children have some delays, but that simply means that we make progress at their pace, rather than an artificial, external one. While my boys have conditions that are defined as disabilities, their lives are not defined by those conditions. Instead, my boys are defined by the love they show their sister and mother, the hard work they put into their schooling, and the way they can make me fall over laughing.

In most cases, strangers would have no idea that my boys have disabilities, and their ability to function so highly is a great blessing. However, when it comes to family and friends, the problem starts. Early on in their lives, the boys’ mother and I had to go through the process of explaining their rare conditions to family and friends.

And that’s when the pity started. I could tell it was pity because as we explained to people about the needs of our boys, we could see their faces darken for a few moments as they tried to process the information they had just received. And then, almost inevitably, the person would smile, offer up one of the previous bromides, or something similar. It was easy to see that offering such "compliments" made the person feel better about the situation, as if they were offering a permanent solution to such a challenging situation.

No matter how kind the intention was of the person offering such sympathy, each comment was like a knife stuck in my gut. The hours of therapy, hours of worry, hours of research, hours of praying, and hours of fighting for the best resources possible is exhausting, and in a single comment, a person could unintentionally devalue the struggle that my family goes through. A well-meant compliment can reduce my sons to nothing more than a diagnosis.

Most adults (and the large majority of children) know not to use derogatory terms to describe individuals with disabilities and special needs, but these same people do not know how to appropriately offer words of encouragement or help. With that in mind, here are some tips on the best way to use language to be kind and supportive, without accidentally offending the receiver.

Do not pity

For every person reading this who does not have special needs or a disability, please, please do not pity individuals with disabilities or their families. Yes, sometimes, a disability can add difficulty to a particular situation, but every single human faces challenges and obstacles, and most often, those challenges do not have a name or plan of action. So, in some ways, having a diagnosis makes life simple, because it is possible for the individual and support team (friends, family, etc.) to hone in on specific ways in which an individual with a disability can be given targeted accommodations.

Even in the most severe cases of disability, love and joy are part of life, and to pity an individual or family simply because of a diagnosis is to devalue all of the ups and downs, adventures and scares that go with living with a disability. Do not pity an individual for having a disability, but rather acknowledge the richness of life that an individual is experiencing. That individual is just like everyone else, they just have extra obstacles to overcome.

Ask, don’t offer

Whether in personal or professional settings, if you are interacting with someone who has a disability, (or, in the case of many non-apparent disabilities, you suspect has a disability), do not assume that the individual (or family, if the individual is with a guardian) need your help. Most people who see a person with a disability want to be kind, and want to be helpful, but approach the situation in an untactful way. Rather than offering the individual (or family) help outright, the best approach is to ask. For example, say, "Hi, I’m Bob. I see that you are shopping for scarves. Is there anything I can do to assist you in your search?"

By asking not offering, you have demonstrated to the individual that you respect their abilities but are willing to help if that is what the individual desires. You have given the individual the power of choice, which is a key step in making a world that is accessible to all people. And, you have prevented the individual (or family) from having to explain the situation, and thereby frame the individual as a product of their diagnosis, and nothing more. As a father, there is nothing I hate more than having to explain my children, as if the only part of their lives that matter are their disabilities.

Speak normally

This point almost sounds like a bad cliché. However, in my experience, many people, when they become aware that an individual has a disability, begin to speak slowly, loudly, and overly-simply. Nothing is more crushing than being spoken to as if one is somehow broken or defective, and speaking in these ways does exactly that. If a disability is apparent, or if you suspect an individual may have a disability, do not change how you speak to a person.

"But what if an individual is hard of hearing?" you might ask. In a case where you either suspect or are told that a person is hard of hearing, you should continue to speak in a normal voice, at normal speed, using normal syntax. If an individual is hard of hearing, and that person wants you to alter your speech, they will request it from you. The same is true for all other forms of disability. If an individual needs you to change your speech, give them the respect and dignity of personhood by allowing them to ask. I promise you that a person with a disability (or their guardian) will not hesitate to ask you for the accommodation in speech that they require. By treating the individual as a valuable human being first, you have created a safe space where the individual knows it is safe to ask for help if needed, and that that need will be met.

There is power in the spoken word: the power to harm or the power to heal. The way in which we each choose to use language will shape the world around us, and speech is fundamental to how we interact with others. The care with which we choose words will have a deep impact on our interactions with others, and our words can either be a blessing to those who have disabilities (and an open door for accessibility), or can be a burden to those who already have to face extra challenges on a daily basis. Let us all use language carefully and thoughtfully, so that we can offer recognition and support without making an individual feel reduced to a diagnosis. This small step is, in truth, a giant step toward creating a more accessible, inclusive, supportive world.