An Open Letter to My Late Husband's Oncologist

Dear Dr. A- :

Of course you know by now that Mr. Simply died November 2 -- you signed the death certificate. You had been his doctor for about 18 months by that point, and I have no complaints whatsoever about his medical care. Neither did he. I am convinced that he got as good a care at N--- Center as he could have gotten anywhere else in the country. We discussed this more than once, particularly when his treatments failed and we briefly considered getting a consultation elsewhere, so I know that he agreed. And he liked you personally, trusted you, was grateful to you for everything you did, not only for him, but for his friend Donnie as well.

But we do need to talk about your compliance -- or lack of it -- with the Americans With Disabilities Act (ADA). Every time I brought him up there, and over an 18-month period that adds up to a lot of visits, I had to struggle to overcome obstacles from the minute I rolled off the elevator.

Parking always seemed adequate, wheelchair lanes were plentiful and wide, and the curb cuts were easy to locate and use. But once I rolled off the elevator into your suite, everything changed. In the first place, there's that sofa directly across from the doors, and the unused wheelchairs parked there, and the unnecessary silk trees in giant pots. Add in any foot traffic at all, and of course there's always bound to be some, and there was no longer enough room for me to exit the elevator on my scooter!

The reception counters are too high for someone in a wheelchair to use comfortably, as are the computerized sign-in kiosks. There are rules, with the force of law, I might add, about this.

The in-house pharmacy around the corner is nearly impossible for a wheelchair user to access, as it is off on a narrow, dead-end corridor which is partially blocked, one again, by waiting chairs.

Speaking of chairs, there are way too many chairs in the waiting room: The rows are too long, and too close together to meet ADA rules. There are rules about how wide travel lanes need to be between rows: You probably need to remove at least one full pair of back-to-back rows in order to make the spaces in between wide enough. Keep in mind that those rows look great when you first arrive in the morning to open up. But when you put people in them, of course their legs and feet stick out, and the lanes become too narrow for a wheel-chair user to navigate without inconveniencing and annoying everyone. And let me tell you, it is no fun, no fun at all, to get the side-eye from a dozen people, coming and going, every single time I had to visit your practice.

You also have rows that are too long. Not only is there nowhere for me to sit in my scooter except out in the middle of the room, but the rows run too close to the walls at each end, and I can't get around them if I need to get to the water fountain in the back corner. You probably need to remove at least one chair from each end of each row, not only to allow travel around the ends, but also to allow us to sit in a row like every one else does. You could probably easily afford to remove chairs: I was there on some pretty busy days, but I never saw them all filled.

That's a key phrase, by the way, "like everyone else". The ADA is about civil rights, about being able to have the same access to businesses and facilities that every other citizen has. It is federal law. But I digress.

Once we left the waiting room, there was the issue of blocked corridors. The ADA specifies that hallways need to be a certain minimum width, and that they can't be cluttered with furniture and storage items. Yours are, beginning with the lab waiting chairs in that first hallway. Once people sit in them, their legs and feet and purses close off enough of the corridor so that it no longer meets federal standards. It is virtually impossible to navigate without everyone having to shift as I come by in order to give me room to pass. And again with the side-eyes, you know?

Once there, there was nowhere for me to park while I waited for Mr. Simply to get his labs drawn except smack in the middle of the hallway, rendering it impassable for staff and other patients. If you are going to have rows of chairs out there, I would suggest at least having the rows short enough that a wheelchair user could back his chair in alongside, or that someone in a scooter like mine could at least pull out of traffic onto the shoulder, as it were.

The back hallways are even worse, given that they are not only narrower but also cluttered with computer carts and such. The examining rooms are so small that there is barely room for me to back my scooter in so that I could participate in Mr. Simply's consultations with you. And then you acted irritated that I was in your way whenever you had to reach past me for a blood pressure cuff or something out of one of the cabinets over the sink. At least one of the rooms was so small that even backing in was not an option. Whenever we met you in there, I had to leave the scooter in the hallway -- adding to the illegal clutter.

Then there's the treatment rooms. I understand the need for every possible square foot of this area to be making money for you, but as many people as I observed coming to chemo unaccompanied, I think you could remove some of those guest chairs so that I could have backed my scooter in next to Mr. Simply's treatment chair. Instead, I sometimes had to park my scooter in a storage area (or yet another hallway) and leave it there for an hour or two while he got his infusion. This was an option, however troublesome, for me but is obviously not for a patient or family member with para- or quadriplegia. Once I was instructed to leave it in the walkway at the exit door to the waiting area, blocking that path for everyone else.

It is not beyond the realm of possibility that I myself might one day need your services. But what all of this tells me is that you and your colleagues have not given any thought or care at all to making me welcome there or enabling me to use your services with any degree of comfort. Possibly you do not even care about my needs: I certainly could interpret my experiences there over the last year and a half in just that light.

The thought of having to overcome all those obstacles on a several-times-weekly basis while sick, weak, in pain, and dying is overwhelming even to think about. I personally would be grateful if you would avail yourself of one of the consultants who specialize in bringing practices into compliance with the ADA, and getting your facility cleaned up so that people like me can use it. We make up 20% of the population -- 32% in the over-65 age bracket, which I bet is where you get most of your patients -- and you would more than make your money back if you invested in these small improvements.

I can find another practice if I have to, but I would not want to. So how about it?

Simply,

Finally

Image by Getty Images via Daylife

Finally, I seem to have gotten a foot in the door at a nearby specialty clinic. I don't have an appointment yet, but at least I've finally finagled a referral and got my records over there, so an actual appointment for the initial consult should be in the pipeline.

The first thing I want from them is a light-weight, fold-up wheelchair that I can heave in and out of the trunk by myself, so I can start going back to bird fairs and bird walks and outdoor markets and PetSmart. So many places and activities require lots and lots of standing and walking but don't provide wheelchairs for patrons with disabilities, and I don't want to have to always rely on taking someone with me to help--or not be able to go at all, which is how it's been lately.

I have no need to pull a Boeing 757 anywhere with it, and have no idea why anyone would. But there you go. At least now I know I could if I wanted to.

Last night I dreamed I had just received my new, first wheelchair and was out for a trial run with some friends.

When one is disabled, one dreams about it in various ways--sometimes I dream I'm no longer disabled, or at least I dream I'm doing things that I can't do in my waking life, like dance or jog. Other times I dream it's gotten worse, sometimes I just dream about it as it is, and sometimes it doesn't figure in my dreams one way or the other.

This was my first "wheelchair dream" ever, which I think is significant. That I was focused on my renewed mobility and was getting a kick out of my new toy I think is a good omen. Increasing reliance on my cane was hard at first. I suspect this transition is going to be different, attitude-wise.

This chair was the luxury sport model, upholstered in butter-soft leather and a little faster than I was comfortable with at first. In my dream, I ricocheted off a wall making a turn, and it tipped me back a bit which was also taking some getting used to. And being a sport model, there was no trunk space: I had no place to put anything other than in my lap: When I get mine, I want saddle-bags or something.

When I was a kid you would still see in long-term inpatient units those old wooden wheelchairs which really were like chairs on wheels--sort of the forerunners of the powerchair, I guess (which is what I want next, for work, but that is another post for another day). Those old chairs had adjustable recliner backs: Funny what you "remember" in your dreams after 50 years!

Anyway, in this dream, my friends kept wanting to do things for me that I needed to learn how to do myself, like getting through doors, and there were obstacles like the decorative vanity, placed too close to the handicap-stall door in a public waiting room, that my friends wanted to shove over for me. But all in all, it was cool. My friends meant well, backed off when I asked them to, and didn't laugh when I hit the wall.

Just push the joystick, and whoosh--away I go!

 Simply,