When one needs assistive equipment for physical disabilities, it is to no surprise that they use them. For example, a walker for a boy with Cerebral Palsy is met with sympathy (and the occasional sideshow glance), but never met with disdain. It’s accepted that this individual cannot function without such equipment, and to deprive him of such, would be a crime.
But a disability of the mind is another story. The mind cannot wrap its hands around handles that prop it up. The mind cannot ask for a physical piece of equipment to assist it with its ailments. It is an invisible disability. Invisible disabilities are often met with less sympathy – if any. Without a piece of equipment to look at, a disability just doesn’t seem as legitimate – or at least this is the implication I’ve detected as I’ve walked alongside my daughter in the short time I’ve known her.
We entered the restaurant on a cold Friday in January, hoping to let off some steam with fast food and a play place. We were tired of hiding in our house. Hoping to expend energy that builds during the primarily indoor winter months, we ventured to do something different: we went out. It was assumed that this would be a challenging undertaking. Going into public places with a child who has ASD is never easy, but we had been here before; it should be moderately predictable. And for the most part it was. But there was one variable we had not accounted for – one thing that we knew existed, but had apparently been ill prepared to encounter: lack of empathy.
The meal was fine. A salad, chicken nuggets, and fries. The nuggets and fries are a shoo in for picky eaters. We sat in precarious comfort – running over all the contingency “meltdown” plans we had created if the event came up. The entrance had went well: Ana and I bolting to the comfort of the booth, while Martin attracted much of the attention with his walker and outgoing personality. Abbey followed close behind, corralling Martin and getting the order placed. The meal was quickly finished and it was time to play. This was the beginning of the troubles.
Martin was intimidated by the slide, and elected to slowly crawl down instead of slide. I was soon under the questioning of a child (who was old enough to know better) about how many more times Martin would use the slide. He was holding up the show of the children who were faster, older, and more aggressive.
“How many more times is he going to do this?” The boy with the unaligned rattail asked.
“As many times as he likes, I guess.” I replied.
It wasn’t that Martin had somehow become the slide barron. No, he was just too slow for the older children’s liking, and it was time to say something about this squeaky cog.
Soon after, Abbey and I heard Martin being interrogated about why he was wearing a diaper.
“Why are you still wearing that thing? Are you a baby?”
Martin has yet to develop the cognitive ability to reply to such a question. I don’t think that my annoyance with such a question is uncalled for. This is because this wasn’t the only thing he was asked about.
Martin’s only three; not unheard of for children to wear diapers to that age. But Martin also cannot walk. So crawling plus diaper plus larger child must mean something’s up, right? By then I was tired of the whole thing. The mother of the two children who had turned the play place into Thunderdome paid no mind to any of this – it was like none of it was important to her, because it was happening within the confines of the playplace. This is an interesting situation for the parent of the child who’s being accosted: you never know how much to intervene, you almost feel “bad” for saying something, because you want to believe that they’re just kids and they say things without any awareness of tact. I don’t think that this was the case in this instance. They had seen Martin enter with a walker, they had looked as we removed his leg braces so he could crawl – they knew that he was different.
This play place became to me a reflection of the world we live in: a big play place with a major lack of understanding.
Move to Ana, now. Ana loves to run, jump, climb, and laugh. But a play place can be a bit overwhelming for a child with ASD if the elements disagree with you. It’s a sensory jungle. But it’s healthy to get her into this; to slowly press her into situations where she can expand her boundaries. However, an unfortunate variable that comes with this is the fact that I cannot (or will not) wear a sign that says, “my daughter has Autism, please be cool.”
Best case scenario: everything goes well, and we leave the establishment with a mild cry or protest. But with best case scenarios, there is always a worst case scenario. On this Friday, we met this worst case.
It was nearing bedtime and so began the slow dance of getting Ana to understand that it’s time to transition to the ride home. Remember, there is no assistive equipment I can use to help her handle a transition – this is an exercise in growth and trust. That evening, Ana struggled. That’s alright, struggle creates growth. This struggle can be misinterpreted as poor behavior. You simply pray they know empathy and pretend like no one’s watching.
As I began to put Ana’s pink puffed coat on, she pulled away at me and the screaming started. The stocking cap with the ball on top was pulled on, and by now it was a full fledged meltdown. If you’re a parent of a child with ASD, I’m certain the word “meltdown” evokes many emotions and senses for you. In a public place, the stakes become even higher. It evolves into a spectator sport.
Our spectators were not so kind that night. As she frantically put Martin’s leg braces back on, I told Abbey that I would go ahead and head to the car with Ana as the situation had gone into the red. But before I could leave, I was once reminded again at the cutting words children can possess due to their unfiltered nature.
“Can you please make her stop? It’s so annoying.” A child quipped from the steps of the play place.
“Wha?” I asked dumbfoundedly, trying to keep Ana in my arms as she arched her back in an escape attempt.
“What is wrong with her? It’s so loud!” He quipped angrily.
“She can’t help it, I’m sorry.” I replied, now glaring solidly at the kid who was not at all at fault for his poor approach to the situation. But I couldn’t help it. I couldn’t help feeling so eye-bulgingly, red-faced, light-headed angry at my four foot tall antagonist.
Strangely enough, this wasn’t the worst part.
Walking through the restaurant was a march of implied shame. Carrying had become restraining, and the stares were nothing short of a gaze upon illicit material. In that moment I felt powerless. Unwilling to stop and tell everyone one by one that “she has autism,” and unable to control the screaming child in my arms, I bore the gaze and continued toward the van. I didn’t feel relief once we were in the van, I felt regret. I regretted the stares, I regretted the gap in information as to why my daughter was having such a hard time leaving the restaurant. But most of all, I regretted feeling like my family and I were an annoyance to the other patrons.
It hit me even harder when Abbey and Martin walked out. I watched a woman stare at Martin in the same way you stare at a wax museum: confused curiosity.
We drove home in silence, and soon, realization hit me. It hit me like an unfortunate truth that comes back to you after long forgetting it – crawling back up to the top of your mind. The episode we had just experienced wasn’t the exception, it was the rule. In our short time as a family, we’d been accustomed to being around people who were aware of Ana and Martin’s disabilities, but as we venture out into the world, we will not always be met with such acceptance. Instead, we’ll come in contact with people who have lived years without seeing someone with a disability. It’s not a part of their ecosystem. This thought rushed through my mind faster than the lines from the interstate rushed under the van.
As humans, I don’t believe we’re naturally wired to accept different. We’re not inherently accommodating – it must be taught to us. Just as we must learn to eat with utensils, or say “please” and “thank you,” we must be taught to feel the struggle of someone else without actually knowing its reality. Empathy.
Do I expect there to be a disability rug rolled out for us everywhere we go? Of course not. My children need to be challenged to adapt, as all humanity should. However, their struggle, be it different, should not be viewed as an oddity or a sideshow. Everyone struggles in their own way, but what makes the struggle of many with disabilities more daunting is the added pressure of a society that refuses to meet them where they are. This struggle becomes more complicated when the disability cannot be seen, and no easy inferences made about the person. No walker, no assistive equipment, no signal to que up sympathy. Speculation starts to arise if the individual even has a disability or not; all because they cannot provide “proof” that they are struggling just as much as a boy who needs a walker.
It doesn’t have to be like this. We have a choice to make as we raise our children; a decision to make about the people we long for them to be. That decision, that choice, is to teach them (just as desperately as we teach them about our politics, religion, work ethic, and anything else we hold dear) to be empathetic to the things that other people face. The disabilities, the living situations, the economic status, and any other thing that makes us different from one another.
If we’re serious about leaving this planet better than we found it, we have to be willing to be the assistive equipment that others need at different times throughout our lives. To look at someone, and ask “How can I help?” instead of “What’s wrong with you?”