Bertrand, his aunt Belinda and I went out for lunch but we were refused service at the California Pizza Kitchen (CPK) at the Gateway Mall. No, we weren't topless, smoking or trying to smuggle in a few dogs. They wouldn't seat us because they don't allow strollers. Any strollers. No exceptions. The hostesses said that strollers aren't allowed because of the fire hazard, but Bertrand's stroller is Maclaren Techno XLR and qualifies as an assistive mobility device. How do they treat people in wheelchairs? Do they turn them away too? (I am guessing they don't.) Bertrand's new wheelchair, which he has to get in order to start preschool this spring, will be even bigger than his stoller! Wouldn't that make an even bigger "fire hazard"? Why couldn't they just sit us at a wheelchair accessible table, which I presume they have?
[For those out-of-the-know, Bertrand is 2.5 years-old but can't sit unsupported, such as in a backless highchair, because of his movement disorder, seizures and level of ability (developmentally he is 0-4 months-old). On top of that he is immune-compromised due to his steroid medication, meaning he can't touch or sit in public items even if he did have the ability. ]
I should've demanded to speak with the manager, but I was in SHOCK. Besides, I shouldn't have needed to speak to a manager--shouldn't common sense prevail? How could they turn away a special needs 2 year-old?! It made me sick to my stomach.
I guess I am grateful that Bertrand isn't aware enough to realize how he was so coldly discriminated against, but I am aware and it breaks my heart.
Bertrand is a beautiful little boy. To the average person he doesn't look disabled, much less like someone with a limited life expectancy. No one can see his brain, liver and nerve damage accumulating.
I've observed a spectrum in the special needs parenting community. As Bertrand gets older, receives his wheelchair and his disabilities become more obvious, we are traveling from one end of the spectrum to the other.
On one end of the spectrum, there are parents of children with no visibly obvious disability (autism, ADHD, cancers, seizure disorders, some genetic disorders, etc.) with the desire for the public at large to acknowledge and accept their child's disability. On the other end, there are parents of children with an obvious disability (cerebral palsy, Downs syndrome, some genetic disorders, etc.) with the desire for the public at large to acknowledge but overlook their child's disabilities.
Both sides wish the public would make fewer assumptions about our children and our parenting. In the case where a child has no obvious disability, the abilities of the child are frequently overestimated (such as in Bertrand's case above: "just sit him in a highchair") and the skills of the parents are underestimated ("why can't you control your child?" or "why don't you just rock him to sleep?" Um, maybe he has NEUROPATHY?!). In the case where a child has an obvious disability, the abilities of the child are frequently underestimated ("we'll just treat him like a baby" and "let's address all questions to the parent rather than the child") and the skills of the parents can be overestimated (many such parents complain about the comparisons to saints and superheroes, or how people say "I could never do what you do!" Um, yes you would--if it was your child!).
I've gotten a little too complacent on the "no obvious disability" end. I just let the public assume Bertrand is a baby (not an almost 3 year-old toddler), smile and don't correct them when they make assumptions--even hurtful ones. I've been too worn out by the struggle to simply save Bertrand's life to go through the emotion and effort of a conflict. After all, how many countless struggles have I had with doctors, insurance, and even Bertrand himself (to keep him fed, medicated, happy and from losing anymore of his skill set)? Shouldn't I get a break?
Today, I should've fought. I should've fought for Bertrand and the other kids and people out there like him: with obvious or not-so-obvious disabilities. When Bertrand's disability gets highlighted by a wheelchair, it may save me a fight at CPK (not that we will ever go again), but what else will it bring? What confrontations will I need to prepare for--for his sake and my own sanity? Will we start fielding questions from random strangers? Will people find discouraging and dismissive ways to underestimate my child? Almost certainly. But from now on, will I confront the ignorance and demand respect for my child? Hell yes.
As discouraging as the whole CPK episode was, it was the kick in the pants I needed. I am back up, out of the corner and swinging for my child.