When People See My Child With a Disability and Say 'I Don't Know How You Do It'

Perception is reality.

You have heard that phrase before, yeah?

Years ago, I learned the phrase as part of a training course about communication with colleagues, clients and staff. It related to the fact that you may say something to someone and that person perceives your words how he/she wants, not necessarily how you meant them. When working in a service culture, we were instructed that “perception is reality”— meaning it made no difference what we meant or intended by our words; rather, the interpretation of the person hearing them took precedence.

For years, I rolled with that theory. I recognized that, in a culture centered on service, one sometimes had to bend to those she served. So, I bent.

And here I am today, looking at this idea in a completely different way. I am on the other side. I am the one who is perceiving the intentions of others.

I am part of the disability community — I am raising a child with a disability. We often hear people say things to us related to our children — things that are clearly negative, some that are clearly positive and some things that lurk in the gray area, that area where perception becomes reality for some of us.

I do not want to fuel that narrative as a parent of a disabled child. I do not want to project my insecurities on another person’s intentions, creating a skewed reality for all of us.

When someone says, “wow, I don’t know how you do it every day. I don’t think I could do what you do,” the hackles go up for a good number of parents of children in the disability community. It’s been a pretty hot topic in the parenting community.

Our knee-jerk reaction, our perception, is that this person is saying we are martyrs, our life is crap and if it were them, they would throw in the towel. We think the comment is negative and diminishes the worth of our children. I believe this perception, by us as parents, not only threatens our own well-being by causing us hurt, anxiety and disappointment, it also threatens to alienate us from those around us who are different. It increases the barriers to building meaningful relationships and reduces the opportunity for inclusive experiences.

People do not like being told what they mean when they say something to you. Can we take a step back and let go of our preconceived notions, built from our own insecurities, past negative experiences, and the history of the degradation of disabled people? Can we try to listen and receive that comment as the commentator intended? Further still, if we are unclear of the intention, can we ask for clarity and honestly, and openly welcome it when it comes?

This takes a huge amount of vulnerability on our part. I get that. It also takes effort, diligence and a desire to shift the narrative. It gives us the opportunity not only to be more authentic ourselves, but also to accept the authenticity of others. As parents of disabled children, many of us are trying to get others to understand what it is like in our shoes. But how often do we do the same?

It’s possible that the person who said, “I couldn’t do what you do” is saying it in an impressed way, as a nod, a fist bump — recognizing a person who is living life well. It’s possible that person can barely handle the life he is living, without the additional challenges he sees in yours. He said it in awe, but it’s really got nothing to do with you or your child. He may see your life and feel unworthy himself.

It’s possible that person passed on being the parent of a child with a disability because she didn’t think she could handle it — and perhaps she was correct. No one will ever know unless she gets the chance to live that life herself.

As much as we parents in the disability community like to say, “I’m just being a parent, I am not doing anything different than you would do in my situation,” I don’t believe that’s the truth. Sure, we want it to be the truth. But it’s not.

We can’t all do the same things. We don’t all have the same strengths and weaknesses. We don’t all want to commit ourselves to something the same way as another does. We don’t all have the same foundation on which to build our lives.

We don’t all have the same ideas, experiences and understandings. All of that plays into what we can do and what we cannot do. All of it plays into what we think we can do and what we think we cannot do. And none of it makes any one of us less than another. Read that again. And one more time so it sinks in fully.

Acknowledging a job well done to another parent should not automatically be perceived as negative. Sure, sometimes people are being jerks, I get that. But your average person is not. How do I know? Because I have been that person and I still am.

I have said, “How did you survive raising three kids all in diapers at once? I could never have done it.” I meant no disrespect toward her or her life. I was truly in awe of her abilities. I had no confidence in my own ability to do the same. I look at mothers in the grocery store with my mouth agape and my eyes wide as saucers trying to comprehend how they do it. I see women who look awesome in their yoga pants, are wearing a nursing baby, feeding a banana to a toddler in the cart and asking their 5-year-old to put carrots in her “future shopper” cart. No one is screaming or melting down.

I think to myself, “I. Could. Not. Do. That.” Meanwhile, I stroll through the store, having left my list at home, leftover mascara darkening the circles under my eyes, trying to convince my kid to sit in the cart all with sweat streaming down my back and tears threatening to escape my eyes.

Here’s the thing, my journey is mine alone. Meant for me. Suited to me. It may take the breath away from someone else to think of walking along the same journey as me — but that’s OK, it’s not meant for them. I feel the same way about their journey. I admire them for living it, but I sure as heck don’t want it myself.

And that’s OK.

So, if you want to look at me and my life with awe, go right ahead! I am doing the same when I look at yours. I assure you, this path is full of some amazing moments, but there are plenty of other moments where I don’t have my shit together. And I am guessing you can say the same.