Two days ago a new friend asked me if I’d like to get together at a restaurant. I said yes. Then I froze.
Feelings of dread came up, as did the impending doom that a new friendship would never happen. Why?
Well, I need a restaurant with booths, where I can put pillows, and lift my feet and legs up in the entire booth like a couch. I need healthy food that won’t hurt or disable my body further.
I hear the pause over the phone: “Are you in a wheelchair?”
“Why do you need to be so … particular?” Answering this has repeatedly saddened me to the point of despair. (I am hopeful, though, and I don’t give up.)
Last summer, a colleague who uses a wheelchair insisted I write about people with “invisible” disabilities. Then she proceeded to lovingly tell me all the things she knows I struggle with going out into the world. It almost made me cry.
For starters, I have a lot of spinal damage, mostly lower, including a nerve still dangerously pinched in my lower back and inflammation diseases of my muscles, joints and nervous system. I also have thyroid auto-immune disease. No, I’m not in a wheelchair. I’ve come close. But due to choices I made to do certain exercises, simple yoga, walking, traction and chiropractic work, plus eating foods that don’t weaken my muscle and joints. I’ve managed to keep walking. Whew! I cannot, however, sit upright on a chair or pull, push, or pick up anything heavy.
Reactions to me often feel futile.
When I ask people to help open a door, I get looks of bewilderment or hostility as if I’m crazy or lazy. Do people resent that I ask for help with things they assume I can do, because I am still standing? (Not for long — that’s kind of hard, too). “You don’t need help; what’s your problem?”
I’ve learned to tell jokes, fast, especially if it’s cold outside: “Could you please open this heavy door. I have back injuries.” (That’s the simplest story). Being a Harry Potter fan, I’ll joke that I left my magic wand at home. It gets people laughing; then they open the door.
I have to ask people to drive slowly over bumps or else my back is easily reinjured. Sometimes people just resent being asked to slow down, and won’t.
I get questioned all the time: I have to sit on a cushy chair, with my legs up, in public space, or I can’t be there. “You need a second chair? Can I use your second chair?” or “You look so comfortable.” Hint: Why am I being given the cushy chair in a room of hard-back chairs, and why are my legs up on another chair? I am so weird insisting on being comfortable out in the world. Although I’ve had people say that maybe they will bring a cushion to the theater next time.
A PCA went with me to a theater in downtown Minneapolis. They made a space in a balcony area, and my PCA carried a fold-up lounge chair for me to use. The theater gave me a second chair for my legs.
O’Shaughnessy Auditorium in St. Paul has it right. They’ve created an open space for anyone with any kind of different seating needs including wheelchairs and lounge chairs.
The issue for me is avoiding becoming more disabled. I’ve been through lots of pain in my life. Why should I go into the world putting myself through more and more pain, risking hospitalization and risking my mental health? Going through incessant pain makes one a bit crazy. I’d rather stay sane!
The only person, except for PCAs or other people with disabilities, who didn’t treat me badly for asking for help, was a nurse. She worked in a group home with women with severe MS. She opened the door for me to a coffee house, with no contempt on her face. She actually lectured me: No matter what it is I need –help to pour the pitcher of water; help pulling up chairs to sit on–I have the right to ask. And there’s no reason to feel ashamed for it.
Wow. That’s awesome.
We’ve been made to feel ashamed of asking for help in this culture. Everyone deserves help. Independence, we know, it’s about having resources that allow us to be able to do things on our own, as much as possible. Who else to model it, but those of us who realize, already, that there is no shame or blame for ever needing help? And simply, because I want to live, it’s something I will continue to do, with whatever elegance, humor and ability I have to do that.