We have the story of an 11-year-old girl who was not permitted to enter a museum because her wheelchair might get the carpets dirty.
A woman at the front desk of the Ships of the Sea Museum in Savannah, Georgia, told Dr. Ken Haas that his daughter, Lexi, wouldn’t be allowed to use her wheelchair inside the museum because, I kid you not, it might get the carpets dirty. Dr. Haas pointed out that the wheels of Lexi’s chair couldn’t be any dirtier than his own shoes, but still no dice. The family was offered a wheelchair the museum owns, which presumably has wheels you can eat off of or something.
Like many people who use wheelchairs, Lexi’s was selected to accommodate her specific size and needs. It’s not like wheelchairs are just interchangeable. Lexi has Kernicterus (also called Bilirubin Encephalopathy), a rare brain dysfunction that can be caused by a toxic build-up of bilirubin in the blood in infancy. The bilirubin, or jaundice, left her with irreversible neurological damage that requires a wheelchair that supports her from head to toe.
So, no, some random wheelchair owned by the museum, no matter how sparkling its wheels might be, wasn’t going to work.
The museum employee then offered (this is the part where I really can’t believe it’s not coming from The Onion) to allow the rest of the family to tour the museum, while Lexi stayed outside and watched a video on a little television screen.
Not surprisingly, the Haas family declined this offer, because that’s not exactly the stuff family vacation memories are made of, is it?
Dr. Haas posted about their experience on Lexi’s public Facebook page, and from there the story got picked up by local and national news.
The Ships of the Sea Museum has issued an apology for the incident, saying that an employee “misunderstood what the museum’s wheelchair policies are.” The museum also terminated the employee, reported WCNC. However, another parent has come forward to say that a similar situation happened at the same museum with her son, who has muscular dystrophy.
I really can’t imagine the lack of understanding it would take to:
a) deny a child entry to a museum;
b) tell a person in a wheelchair they had to switch to a different wheelchair; and
c) tell a family to leave their disabled 11-year-old child outside.
The Haas family has said they aren’t planning on filing a complaint under the Americans with Disabilities Act, but that they did want to shed light on the lack of awareness that people with disabilities face.
Make no mistake: people with disabilities, whether visible or not, deal with ignorance on a daily basis. Whether it’s due to poor design, failure to comply with the American Disabilities Act, or the astounding capacity for some people to be complete jack holes, people with disabilities cannot access places that most of us simply take for granted.
Even small actions (or inactions) make public spaces less accessible. Disability rights activist Rachel Cohen-Rottenberg wrote yesterday on her blog, Disability and Representation, about what she calls “microaggressions.” As an example, she relates a recent experience at the post office:
From the way he was walking toward me, it was clear that he assumed that I was just going to get out of his way.
Please bear in mind he was looking at a woman who is 5’1″ and uses a bright red cane. The only way he could have missed either of these things is if he were walking toward me backwards. Which he wasn’t.
Ms. Cohen-Rottenberg says she would normally step to the side, but it wasn’t possible for her to do that in this case without losing her balance.
So I just stopped for a moment, made clear my intention to keep going along the same trajectory, and said, “Excuse me.” I figured that he wouldn’t be such a total jerk as to run right into me. And he didn’t. Instead, he audibly sighed, stared me down with a look of utter disgust on his face, shook his head as though I had just committed some sort of unthinkable breach of social ethics, and went around me.
I turned around to look at him, and as he walked away, he was still shaking his head as if to say, “What is the world coming to when an able-bodied white man can’t expect people to get out of his way?”
Obviously it’s not the same dynamic at all, but when my twins were babies I had a side-by-side double stroller, just slightly wider than a standard wheelchair. It was truly eye-opening to realize just how many people think they own public spaces, and how many places that appear to be accessible really aren’t.
The post office in my town has a ramp, but the door isn’t automatic, so it would be impossible to enter unless someone held the door–which isn’t always going to happen, because common courtesy is no longer common. Sidewalks in my town are uneven, and on garbage day trash cans block the path. The aisles of the small local stores I wanted to support were impossible to navigate. Even taking my kids into Center City Philadelphia, where the sidewalks are plenty wide, I’d get the evil eye for having my stroller take up space. Also, smokers would carelessly flick ashes wherever they were, not realizing/caring that they were flicking them ONTO MY KIDS.
Although our stroller days are past, our family still deals with random people who think that my autistic kids shouldn’t be flapping, stimming, rocking, etc. in public spaces. And I’m also frequently with family and friends when they help their children navigate the world in wheelchairs.
What can I do? What can you do? Well, for starters, those of us who aren’t disabled can pay attention. If you haven’t read them, the blogs Disability and Representation and The Body Is Not an Apology can make you far more aware of the insidiousness of discrimination against people with disabilities.
We can speak up. It doesn’t have to be a big scene, but when you see someone being rude, call them out for it. I realize that we may not all agree on exactly the right thing to do all the time, but on the other hand sometimes it’s pretty obvious when someone is being a privileged jerk. If you get up to give someone a seat on the subway, and some jackhole snags the seat before the elderly/disabled/pregnant person can even get there, don’t just let it slide. I figure that since that person’s parents didn’t sufficiently teach them manners, now the job falls to the rest of us.
Also, and perhaps most importantly, you can raise your kids to use common sense and common decency when it comes to other people. At my kids’ elementary school, the first kid in line holds the door open until the rest of the class is through. They teach the kids to hold the door open for someone whose hands are full, whether they’re full of books or holding onto a cane. It’s one of those little things that doesn’t seem like a big deal, except it is. They don’t just walk through and let the door slam in another person’s face. Is it a school’s job to explicitly teach kids to hold the door open for someone? It shouldn’t be, but I’m glad they’re doing it.
You can model decent behavior. You probably don’t need to make a big announcement out of it (“Hey kids, look at me stepping aside to give space to that lady using a walker!” “I’m awesome for holding the door for this mom with her hands full of groceries!”) but it is appropriate to talk to your kids about this stuff.
And you can make sure that your kids understand that public space is for everyone. When your child asks you about that person who is different, when your child stares at the kid who is being “weird,” and they will, that’s your chance. That’s when you tell your child that a person in a wheelchair, using a cane, using a wheelchair; a person flapping her hands or mumbling words over and over; a person with a service dog; a person with an assistant: they all have just as much right to be there as you do.