Disability Pride

 

Can you imagine living your life being judged and discriminated against for the thing about you that makes you different and vulnerable?

Thirty-five years ago, the Americans with Disabilities Act was enacted. July is designated as Disability Pride Month. It's a time to educate the public while promoting inclusion and accessibility for individuals with disabilities.

I wasn't sure where I wanted to go with this topic, but two separate incidents this past year have taken up too much residency in my mind. It was time to expel them the best way I know how.

You travel this journey long enough, and you develop a thick skin. However, that tough exterior doesn't stop the frustration when your child is consistently bullied or excluded because their abilities, or lack thereof, are not the norm.

It's been our experience that many individuals who are eager to embrace diversity and inclusion don't want to include individuals with a disability. I often want to shout, pick a lane, and stay in it because you are doing it wrong! You cannot claim acceptance for one group of marginalized people while looking down your nose at another group. Well, you can, but it makes you a hypocrite.

Over time, Jayde and I have grown familiar with rude looks, glaring stares, and insensitive comments. The cause? Something as simple as a handicap placard, Jayde-Rhiannon in her wheelchair, boarding first on an airplane, or skipping the line at amusement parks. My favorite retort when we are accosted with insensitive or aggressive comments is, "And you don't look like an asshole, but that just goes to prove you can't judge a book by its cover." So far, my reply has managed to stun and silence the ignorance long enough for us to escape without further dialogue or confrontation. Yes, I know I sound rude. However, when you're stopped by insensitive people who are irrationally and aggressively angry because you utilized your disability rights, your only thought is to shut them up and quickly remove yourself from the volatile situation.

A month ago, Jayde attended the local carnival on two different nights. Several weeks ago, there was a music festival in DC. Albeit she checked in with the medical staff upon arrival both days of the festival because it was the responsible thing to do, AND my Baby Girl is growing up. My point is that people who are aware of her illnesses still question the legitimacy of her health issues because she is not confined to her wheelchair or bed. 

A few months ago, I was excited to meet some friends for lunch. After a terrible morning and almost canceling, I listened to the laughter amongst us and was silently thankful I didn't cancel. As our lunch wore on, the conversation easily and freely flowed. I happily sat, listening to the unguarded, spoken thoughts of these women who are dear to me. We discussed our shared disdain for a local airport. I relay multiple stories of Jayde's misadventures and mistreatment by TSA. The conversation turns as one of the women chimes in, "I watched a woman being wheeled through the airport. Then, when she gets to the gate, she gets out of her wheelchair and walks to the bathroom. I thought, really? All so you can board the plane first." 

I think about why we tend to avoid taking Jayde's wheelchair into a public bathroom. The unnecessary germs on her chair, keeping the accessible stall free for a user who isn't mobile, and the difficulty of maneuvering the chair in confined spaces are at the top of our list.

A few weeks ago, Jayde came home and told me she was at a diner and gave the manager a necessary ADA lesson after watching and helping another woman as she struggled because the "handicap" stall was not up to code. The manager was surprised, claimed she was unaware, and thanked Jayde. That's MY girl!!!

Anyways, as my friends continued conversing on the topic, they had no idea I was quelling the discomfort their comments brought. I bite the inside of my cheek, ensuring my very tired thoughts do not morph into spoken words that come rushing out like a dam that has burst wide open. Success, I kept my mouth shut. And, it felt horrible.

It is then that I realize, even in the safest and most loving of places—it is there. Even amongst the most unjudgmental people—it is there. The ableist mindset. The idea that if a person is not confined to their wheelchair 24/7, they couldn't possibly be disabled. Nor do they deserve handicap privileges. The notion that someone should have to validate their disabilities to strangers is infuriating. How do you explain in a few moments something which cannot be seen?

For a minute, their conversation becomes background noise as I wonder if our family had not experienced all we did with Jayde, would I share their sentiments? Would I still see the invisible?

A few hours later, as we part, I drive home, contemplating those questions. Jayde's illnesses opened my eyes to an invisible world I never wanted to see. Nonetheless, I've seen it. I've lived it, and for her sake, I'd give anything for our family to unsee it.

Once I arrive home, I am greeted with loving arms. "How was your lunch?" I sigh, "It was ok—" As Jackson looks at me, he sees me. "But?" I quickly respond, "Something happened that bothered me." He listens intently as I tell him about the conversation. He utters a knowing, "Ah, I see." I pause, "But that's just it. I don't. I know the comments were not made with malicious intent, directed at Jayde, or intended to make me feel some sort of emotion. These are some of the most genuinely kind and loving women I've ever known. Still, it really bothered me. If they see things from this point of view, it's no wonder the rest of society is so vile." He nodded in agreement before making that one statement every husband struggles to utter, "You are right."

The remainder of that evening, I second-guess my silence. I should have spoken up. Should I bring it up the next time we have lunch? The Mama Bear and advocate in me screams a resounding, yes. The exhausted mom, wife, and whatever else I am quietly said go to bed and allow sleeping thoughts to be still—even though it goes against everything in my nature. A final thought as I drifted off to sleep in those early morning hours: why is it easier for people to doubt and judge what they cannot see instead of believing the truth in front of them?

A week ago, in the presence of Jayde, an individual well-versed in her illnesses commented as their package delivery driver was walking away, "Put some meat on your bones, boy. You need to eat something." Though I quickly turned my head to catch Jayde's reaction, I didn't need to look at her to know the comment negatively affected her. Her eyes told a lifetime of sadness at hearing that one comment. Again, I know there wasn't malicious intent, still Jayde spent the first sixteen years of her life being judged, ridiculed, and bullied for her weight. The point I make here is two-fold: first, most disabilities are invisible, and secondly, you never know what someone is going through—so just be kind. Not everything needs to be said. Your words have weight—weight to hurt or weight to heal—use them wisely.