Hopeless

I wasn’t going to post today.

I had a relaxing day planned of sightseeing and hanging out with my daughter. She had a big day yesterday, and I wanted to give her — and me — a few moments away from the intensity of life-decision-moments, some time where we could just *be*. Celebratory without being energetic.

But as with every time we leave the house together, as with every time we’re in a crowd, as with every time new people encounter my daughter, we ended up with a different (and this time negative) experience from what we planned.

Seriously, all I wanted was to see the falls. Take my daughter someplace new.

We trekked to the Columbia River Gorge, scenic and raw even on a soft day like today. The drive took us less time than we expected. The site is pretty accessible, but the inclines are steep, so I was pushing her manual chair up some taxing hills. They weren’t long, though, and there were places to stop. The view was worth it.

We managed the two sets of stairs in our usual fashion, moving her out of her chair to rest on the step, then me carrying her chair up the steps, then going back and carrying her up the steps to sit in her chair again. Not a lot of steps, for which I was grateful.

For a Wednesday morning, there was a good crowd. Lots of young children out of school. Lots of older people. Lots of people who found my daughter more fascinating than the enormous waterfall they had come to see. Lots of people standing in our way, mouths agape, as we made our way up the hill. “Excuse me,” I’d say, trying not to lose momentum while still trying not to hit them with the chair. And I was not inclined to hit anyone with the chair. At first.

The rough pavement made the steep switchbacks a challenge, as did the little kids standing in front of my daughter, immobile, staring dumbfounded. I sometimes stare at her in awe too, because I think she’s incredibly beautiful. I try not to stand in her way while I do it, though. I try not to stand in *anybody’s* way, as a point of fact. Maybe that’s because I can think about people other than myself.

We made it to the bridge over the falls, a gorgeous view of a spectacular natural attraction. A kindly gentleman taught my daughter the trick of looking at the falls for about a minute, then moving your eyes to the right, and watching what happens. (The falls appear to shift with your gaze. I couldn’t execute the minute of looking at the falls.)

The bridge got crowded, so we moved off to the side. More pictures, a selfie of us two, a picture taken by a generous passer by. I love when strangers reach out in kindness in that way; it connects us all, in some way.

More kids arrived. Four to seven seems the age group that has the hardest time peeling their eyes away from my daughter. While we stood waiting for the crowd to thin out before we made our way down the path, two little girls stood directly in front of my daughter, staring at her, while the view of the waterfall languished, unwatched, behind us. My daughter, nearing the end of her rope, pointed to the falls and said “it’s up there. the waterfall is up there. not on my face. up there.” To no avail. The girls sucked on their fingers and gazed, now apparently completely baffled, their parents similarly dumbstruck, but at least averting their eyes from the talking person in a wheelchair.

We had to push past them to get back on the trail. The trip back down the hill was more challenging than I expected. Different muscles are required to prevent the chair from careening out of control down the steep incline, from running into the young child trailing behind her parents, distracted looking behind herself at my daughter, who was holding on to the back of her seat for dear life. My shoulders and triceps complained as I pulled my daughter’s wheelchair against gravity. My quadriceps twinged with the effort of stabilizing our movement. The poor pavement complicated our descent. People passed us, brushing against me, in their haste to escape. I stopped twice to rest my arms, but finally made it to the landing of the stairs.

At the bottom of the stairs, an older woman stood, mouth agape, eyes fixed on my daughter and me. As my daughter engaged the brakes on her wheelchair, I stared pointedly at the woman, hoping the fact that I had “caught” her staring would shame her enough to make her stop. It didn’t. My daughter sat on the step, I carried her wheelchair down the stairs and situated it feet away (the safest spot) from the staring woman.

She didn’t say a word.

I went back up the stairs, picked up my daughter and turned around. The staring woman was still staring. My daughter, now completely fed up, waved at the staring woman. I joined her. My daughter pointed at the falls, which were behind the woman, and said “They’re up there!” The woman continued to stare. I joined my daughter in pointing. “They’re up there!” She didn’t register that we were even speaking to her.

Finally, as we got close enough where we thought she could hear us, my daughter said “Please don’t stare at me. It’s rude. The falls are up there. Please don’t stare.”

As we got to the second-to-last-step, the woman sidled over to us and said “I think you’re trying to say something to me, but…” Now livid, I set my daughter in her chair and said “We were telling you not to stare at my daughter.”

“Oh, I wasn’t staring. I was watching, and thinking about asking if you needed any help.”

My eyes widened at her blatent lie. She had watched me take the wheelchair down the stairs by myself, had watched me go back up and pick up my daughter without making a sound, without even the hint that of a motion in my direction. There was no way she intended to help. “You’re a little too late for that now, but thanks.”

“Go to hell,” she said.

Now, I’ve gotten flak from some corners about how it’s my responsibility as a parent of a child with a disability to educate the world about disabilities, to engage with people who stare, to expand their understanding with some gentle, informative speech about my daughter’s condition and people with disabilities in general. I’ve been told I’m in a unique position to share knowledge, and that I have a moral obligation to do so.

I won’t.

My daughter is a person. She happens to need a wheelchair, but she’s a person. She has a right to encounter the world on her terms — not on terms other people wish she would follow, but on her own terms. That means that she gets to go to public places and just BE, without having to explain herself or excuse herself or act as an ambassador for her disorder or for people with disabilities. That means that she has *no* obligation to educate rude, stupid people who don’t have the sense God gave a hamster.

Furthermore, she is my CHILD. She is the person I love most in the world, and will protect with every shred of life I have in me. When the world is being cruel to her, treating her unkindly, I am NOT going to passively allow them to treat her like she’s an object. She. Is. A. Person — not some sideshow act you’ve never seen before. She’s a living, breathing, thinking, hurting person. And I will shield her to the best of my ability, even when YOU think I should act as tour guide to the Wonderful World of Crippled People.

When a person treats my daughter with respect, when he ackowledges her humanity by speaking to her directly with questions or pleasant conversation, I am more than happy to engage in some knowledge transfer, a bit of disabilty education. When you stand in front of my baby with your mouth hanging open, when you are a 60 year old woman has no sense of how you’re behaving in this world, I will not spend my time and energy trying to educate you. My efforts are better spent talking to my child.

I don’t care if you think this makes me a horrible person. I don’t care if the disabled community believes differently. After 20 years of dealing with people like this every single F*CKING time we leave the house, this subject is no longer up for discussion.

If you want to be educated about disabilities, read a book. Better yet, ask a question! Be a human being, for crap’s sake, and open your mouth. But if you treat my daughter like she’s some bizarre phenomenon that you simply cannot take your eyes off of, if you stare at her slackjawed, immobile, standing in the center of a crowd as if you’ve been turned to a pillar of salt, my rudeness is the least of your worries.

You never know: I may just snap from years of dealing with ignorant rednecks like you and plough my daughter’s titanium wheelchair into your shins.