It’s the reason why I cringe as people walk past me after I’ve parked in the handicapped spot, the reason why I chose a bright blue hearing aid instead of one to match his hair, and the reason why I’d almost rather be using an adaptive stroller rather than an average one (though the cost of adaptive equipment will make you re-think that real quick). To the untrained eye, no, my son doesn’t look
disabled/ handicapped/ abnormal, and I guess I am glad for that - although to say that is rather guilt-inducing because I don’t think that anyone with more obvious disabilities should be ashamed of that, either.
As a society, we just need to stop judging books by their covers. There are thousands of invisible illnesses, both physical and mental, and with the ever evolving findings of modern genetic science, more and more new diagnoses are being discovered every day. Not everyone who is chronically ill looks it.
Being “ill” or “not of sound mind” doesn’t have to equate to looking disheveled, unhappy, pale, and nauseous at all times. Many chronically ill people are very happy, despite their challenges, and on the flip side, many people try to mask their illnesses with clothes and makeup.
For heaven’s sake, when my son was in the NICU
, I would wake up in the morning, slap some makeup on my face, and forego sweats for “normal” clothes, just to maintain some sense of normalcy in my life. (Anyone who knows me, knows my love affair with makeup began long ago. If I’m not wearing any - you should ask me what’s wrong.) My breasts were painfully engorged, my C Section scar was still healing, hot flashes were in full swing, and the trauma and depression of having a baby in the NICU was as fresh as it gets — on top of the emotional rollercoaster brought on by hormonal changes the body already endures post delivery. I was in the worst emotional shape of my life, but it wasn’t obvious from the outside. I’m not the type of person to complain about pain, either. I tend to push through it — which isn’t always the smartest thing to do, but I’m working on it.
As a new mother, even with all the tubes and monitors hooked up to my son, I just saw a beautiful baby boy, but the view from the eyes of Geneticists
is much different. They saw a premature boy with underdeveloped lungs, wide set, almond shaped eyes, low set ears, tucked in thumbs, a sacral dimple, a short neck, a wide bridge on his nose, and much, much more. At first glance, they saw a genetic abnormality — not including what was already visible on prenatal ultrasounds and echocardiograms. The average eye doesn’t pick up on these things. Many times, they are subtle. Do you have a pinky toe that crosses over the others? Genetic abnormality. Do you have dimples in your cheeks? Genetic abnormality. Do you have dimples on your back? Genetic abnormality. See where I am going with this? We all have genetic mutations, it’s just that some present more critical issues than others. Dimples in your cheeks is seen as cute and attractive. A dimple on your spine could indicate Spina Bifida.
So, why do we think that chronically ill people should look sick all the time? Who knows. I guess we have been taught overall that people who have something “wrong” with them should look different. As a mom of a medically complex child, I face this everyday — when waiters ask if I want to order anything for my son and look at me like I’m crazy when I don’t (he has a gastronomy tube), when people comment on my son’s legs that “stick straight out” in his stroller (hypotonia), when people ask me if he’s talking, crawling, or walking yet (he’s globally delayed). It seems I’m explaining myself all of the time — which I don’t really mind doing, but it is exhausting. Physically, he’s grown into a lot of the features that looked more “dysmorphic” when he was first born. Most of the time, people stop me because of his adorable curly head of hair than anything else. But I can’t help but feel like people don’t believe me sometimes when I say he’s disabled.
“Well, I don’t understand how he can be disabled, he can move his legs.”
Yes, it is confusing, I can see that. He can
move his legs. He is not paralyzed. Disabilities are on a spectrum. There is a vast range of ability to see, hear, talk, and walk. Hearing impaired doesn’t meant completely deaf. My son will need a hearing aid for one ear only and for certain frequencies, not all of them. Vision impairment doesn’t mean completely blind - do you or someone you know wear glasses? I do. My son probably will, too. There are tons of different types of speech impairments, not just non-verbal. And there are many people who use assistance for mobility — for example, wheelchairs are sometimes used only for long distances. Then you have walkers, standers, and gait trainers, which my son will be starting to use soon.
So, as you can see, in the world of “disability,” not everything is black and white. There is a ton of grey area, and I am still learning about it every day.
I don’t fault people for not knowing about this world if they have never been exposed to it. I don’t get mad that more people don’t understand what living with a handicap means. When venting about my frustrations with my husband one night, he stopped me, saying, “you know, you don’t have to go out with your sword and shield defending our son everywhere you go.” He was right. I don’t have
to explain myself to everyone I meet. I don’t have
to make our story public. However, I do enjoy sharing our story, for its cathartic value as well as for the wonderful connections I’ve made. I truly believe that by dropping our judgments, and getting to know one another a little more deeply, our perspectives would shift monumentally every day. So, with no sword and shield, and with no judgment, I simply extend an invitation to get to know our story, and the stories of families like ours.