Oh, The Places She Can’t Go

I hate stairs. Let’s just start there.

Actually, let’s back up. You need some context.

Lamp has two power wheelchairs. One is her “real” wheelchair. It’s the wheelchair we got through our insurance company when working with a physical therapist in San Antonio. She started training on the chair when she was about 18 months old and we finally brought it home when she was 2.5 years old. Her second wheelchair was made for us by a local non-profit organization here in Ohio called May We Help. It was specifically made for her to use around the house.

See, her big wheelchair was not great for everyday home use. She couldn’t get in and out of it herself because it’s taller and she needs to be buckled in–something she can’t do on her own. It did little to improve her independence at home. Her little wheelchair improved her life at home exponentially, but it is not something she can take to school. She can not travel with her little wheelchair. It was made in a garage, not in a factory. Therefore it has no FDA approvals and or manufacturing oversights. It is much more fragile. Occasionally we take it on outings, but it can’t go on our car lift (and it would never survive a plane flight). So even though it is lighter, it is not necessarily easier to transport.

Well Lamp’s “real” wheelchair battery just died. 4 months after we replaced her old battery. OK, so why don’t we just get a new battery? GREAT QUESTION. It took about 5 months to get her battery replaced the first time and no I’m not sh*#ing you, because insurance companies feel pretty blah when it comes to a person’s mobility. (To be clear, the chair still worked during this time but 5 months is ridiculous.) And it’s not the battery this time, it’s the motor and to be clear, right now her chair is not operational. And a motor will take at least another 6 months to replace. (Out of pocket this repair will cost around 4K.) BUT since she is eligible for a whole new chair, if we spend our insurance money (and time) getting a new motor then we will not be able to start the year long process of getting her a new chair. Yes, you read that right, it is a YEAR LONG PROCESS to be fitted for, get the insurance approval and to finally receive a new wheelchair. (Or in the case of this boy, over 2 years.) Of course if you know this ahead of time and can plan for your wheelchair not to suddenly crap out on you, then maybe this isn’t so bad. But when your daughter has no mobility at school or in other public places right now and you’re being told it will be 6 months to a year before she has access to mobility again, it’s kind of a big deal.

Maybe you’re wondering why we don’t just pay for a new chair out of pocket. Another great question. Because a new power wheelchair will cost at least $25,000. Minimum. Some are upwards of $80,000. Here’s one person’s explanation of that insanity.

When we asked the wheelchair specialists affiliated with the local Children’s hospital what our options are in the meantime, they pointed us in the direction of eBay, suggesting that we purchase a used power wheelchair out of pocket to tide us over for this next year long process. This is probably what we will do. And if you’re thinking about suggesting a non-profit, or reaching out to the so and so’s, I would just like to say it’s not about the money. It’s a broken system that is failing a lot of people and it shouldn’t be this way.

And now I am a bubbling brew of anger, sadness, frustration and even a little dash of rage. O-rage-eno, if you will.

And with this current crumbling of mobility and the abyss of waiting, waiting and more waiting I have been having a general accessibility crisis. I am feeling all the strains of a life that is intricately connected to and heavily dependant on a mobility device, insurance companies, and accessibility in it’s most basic forms.

Which brings me back to the stairs.

I hate stairs. To see a set of stairs is to see a blockade. An invisible to most, but obvious to us, you’re not welcome sign. A S.O.L. sign. It’s not just inconvenient. When you have a wheelchair, stairs are an impasse. Or in our case, when you have a daughter in a wheelchair. And, even more specifically and more difficult to work around, a power wheelchair. Lamp’s old power wheelchair was a relative light weight at 130 lbs. Two people could lift it into the back of the car if necessary (and it was often necessary) or up a stair or two. But most power wheelchairs typically have a starting weight of around 300 lbs. and there is no jimmying that thing up a stair or two.

And they are everywhere these damn stairs. Yes, the Americans with Disabilities Act, or ADA, made it illegal for federal buildings not to have accessible entrances and exits  except if it threatens the historical significance of the building or structure. Try living in a gem of an old city that (for good reason) cherishes it’s historic architecture and old homes. And yes they are beautiful and historic, but they are often unflinchingly, unapologeticly INACCESSIBLE.

For example, this past Christmas break my older two girls attended a theatre day camp in a beautiful arts center that sadly, did not have a ramp. Of course the good people running the camp offered to help carry her wheelchair up the stairs. But I knew better. So instead of bringing her larger “real” wheelchair we opted to bring her smaller, custom wheelchair because it is lighter and easier for me to carry up the stairs. Please note: To carry it up the stairs I must remove the battery in the back and carry that up the stairs first. Then go back down and with my 10 year old daughter’s helping, carry the rest of the chair up the stairs, open the door, replace the battery, easy peasy lemon squeezy. Doing this exercise twice a day in frigid temperatures brought some of this anger to a low simmering boil.


Oh, the places she can’t go. 

You know this past year we saw the toppling of historical statues in many cities in the South because while history is important, the context in which we celebrate and remember that history matters. The lessons of the Civil War should be forever remembered, taught and discussed. But statues celebrating Confederate generals–in essence celebrating slavery and racism–have no place in our world, no matter their beauty or historical significance. Because when choosing between a historical statue or living, breathing people with blood in their veins and beating hearts we choose the living, breathing, beating-heart people every time.

It should be no different for beautiful, historical buildings and the living, breathing people with beating hearts who want to ACCESS those buildings. The decision should not be tough. People over history. We got a man on the moon in 1969. Why do we care more about getting a man on the moon when we have people on earth who can’t get to arts centers and bagel shops? Sigh. Then again, it did take us until 2017 to tear down Confederate statues.

And then there are the private residences. People’s homes. When we go trick or treating or caroling–even in our current neighborhood that is mercifully flat–there are stoops and front porches, sidewalk steps and curbs–that keep our girl from going with her sisters up to the front door. Of course we’ve adapted. The other two girls ring the bells and come back down to the rest of us, or they stay and point to their sister while the givers of candy smile and reach in their bowls for an extra big handful to take to the little girl in a wheelchair. And every now and then I think about how strange it was that there was ever a time in my life when a set of stairs felt like nothing. In my best Jerry Seinfield voice I now often think, What’s with all the stairs?

And play dates. A friend invites her over. I smile. Thank you. That is so nice! And I try to gauge if we can switch the play date to our house. Will they be offended? Will they think I don’t want to come to their house? Please understand, it’s just easier on our home turf. In theory we have no problem coming to you, but in reality you probably have stairs somewhere on your property and while you may not realize it stairs are the least inviting of all the things in the world to a little girl in a wheelchair, so can you just come to us? Again? Always? 

And that works for now. Mostly. They come to us or we bring her small chair and go to them. Sometimes we forgo the chair altogether because she’s 7. She scoots on the floor and makes her way around and it’s no big deal because, again, she’s 7. But it will be big deal some day. When will she no longer be OK without her chair, scooting around on someone else’s floor? 8? 10? 14? I don’t know, but it’s coming. And then what? Will they always be OK coming to our house? Will the invitations cease? Will friendships and relationships be strained because of inaccessibility? Maybe her best friend will live in a one story ranch, I think. I hope.

On the one hand it feels ridiculous to have this inner resentment to the stairs I see on nearly every home, on every street, in every town. It’s not personal, I get it. But on the other hand, every home with a porch or a stoop or more than one step is a home my daughter won’t be able to access in her wheelchair, a mobility device that she is intricately connected to and heavily dependant on. And any which way your slice it or dice it, that is a sad, frustrating, heart-aching realization.

Oh, the places she can’t go. 

When I say these are the things that keep me up at night, I mean I literally got out of bed at midnight to write all of the above because it was KEEPING ME UP.

I once said, “I want the world to make space for my daughter. I want it to be accessible by wheelchair and accessible by opportunity.” As I’ve learned, accessibility is more than wheelchairs and ramps. But in order to access opportunity you need the most basic access first. You need mobility. You need ramps and wheelchairs. You need access to buildings where learning, working and opportunity take place. (Preferably not around the back on the trash ramp. Been there, done that.) You cannot grow relationships if you can’t get into the places where people go to hang out, play and talk.

We’ll most likely continue to adapt. And of course I’ll keep speaking up, spreading awareness and raging against the machine with the hopes that one day I will be able to say,

Congratulations! Today is your day!
You’re off to Great Places!
You’re off and away!


You have brains in your head. 
You have wheels on your chair. 
And all the buildings have ramps 
and elevators everywhere. 


You can be on your own because the world has made it so,
you have access to decide wherever you go!

Oh, the Places Everyone Should be Able to Go.