The day no one offered any help

It had the makings of a horrible day. There I was in an unfamiliar city. The week before, I had flown to visit my family for Thanksgiving. The week before that, I had flown to an only slightly familiar city for a job interview. In between these travels I had been seeing patients.

So I was neither at my physical nor mental best. I dragged a little, literally. I relied more on keeping my knees bent backwards to maintain balance, which is necessary but not ergonomically advisable. Remaining upright in a chair was starting to take conscious attention. I was starting to alternate between speed-talking and gaps for word-finding. The airport where I changed planes has accessibility carts which keep people from being run over by sporting both flashing lights and beeping sounds. I had to move to a wall, stop still and close my eyes whenever I started to see the blinking, to prevent disorientation. I finally resorted to Advil for the sensory overload headache and was glad I had worn a necklace to keep my hands busy. The best I can say about my diabetes control is that I was still alive.

And so it was that I arrived for the annual meeting of a group which means a great deal to me, one of the few reasons I even considered getting on a plane for a third week in a row. I’ve described the group facetiously as the 30 other people in the country who care as much as I do about how health care students are taught to think about disability, and there’s a more formal mission statement but not necessarily a more accurate one. This was my third annual meeting. I’ve also participated in telephone meetings, both of the group at large, and of a smaller task force, over the past few years. And there have been e-mails and e-mails and e-mails. But while not a group of strangers, this wasn’t exactly a group of familiar folks.

And yet, I felt safe. And I knew from prior experience that I would be able to feel safe. And when I got home and slept and put things together, I realized a major reason why I had felt so safe.

No one offered me any help.

There’s more to it than that, of course, and underpinning the more is probably the reason why no one offered help. While not a disability-exclusive group, or even a disability-majority group, it is, for lack of a better term, a disability-parity group, and a group with multiple participants with disabilities.

Note that the salient factor is NOT that it is a group dedicated to a disability-related cause. I find having a disability mission, in and of itself, does not make a meeting a safe one in which to be disabled and often is precisely the opposite. I work in a disability field, after all, and I go to conferences and meetings talking about people with disabilities all the time. And I find them necessary for my professional purposes, but always exhausting and frequently alienating. Over and over I hear about the “us” taking care of the “them,” no matter how “them”-like I may be. Buried amidst the hours of negative language and attitudes, used casually and knowingly are the nuggets I need to keep up my clinical knowledge.

I have had to carry plates of food up and down stairs at a professional meeting related to disability purposes. (I had not thought to request accommodations because I did not expect stairs in a hotel conference room between the tables and the food.) I have been knocked down at a professional meeting related to disability purposes when an acquaintance grabbed my arm in greeting. I learned that the stage to the main auditorium in our medical center is not accessible, three days before I was scheduled to give a talk from it, on a disability topic at a conference addressing disability issues. People running workshops at disability conferences want participants to write things down on paper, right then and there, and never make it explicit whether these papers need to be handed in. And of course, any attempt of mine to sit on the floor is met with instant angst as people rush to tell me that there are, in fact, chairs available.

But one of the missions of this group is to teach people respect for people with disabilities, not just to take care of them. And that’s a start. Even when discussing care of people with significant cognitive and communication impairments, we have written as a curricular goal for health care students that they should talk directly to the patient, adapt interview styles as needed and learn about alternative communication methods. We have also written, explicitly, that while input from family or professional caregivers is often needed, quality of life can only be fully understood from the patient’s point of view and with their input. That’s powerful stuff, right there.

Having multiple active members with disabilities helps a lot, too. It eliminates tokenization. People with disabilities are able to share their perspectives and experiences and even share differing opinions, because none of us feel compelled to speak for all people with disabilities, all people with our own disability or the entire disability community. Meetings are held at a location that has accessible transportation from an airport, with accessible hotel rooms available, with accessible transportation options from the hotel to the meeting location. These things are discussed, not as irritating special accommodations but as absolute criteria when choosing a city. (Other criteria include cheap hotel rooms and a free university meeting space where people who cannot attend in person can call or internet in.)

And so I was not the only person with a disability in the room. At highest count, when some faculty of the hosting university joined us for lunch, there were 3 people with visible disabilities and at least one with an invisible disability in a room of maybe 25 folks. At least one person participating by phone also has a disability.

That alone doesn’t explain it, though. I actually have a number of colleagues who have chronic physical or mental health conditions that could well classify as disabilities under at least some circumstances, and who are open about having these conditions. None of them really identify as Disabled, though. They don’t think about disability conceptually, culturally or politically the way I do, either about their own conditions or about disability in general. And I am definitely the most visibly disabled person, and the one who has tales of requesting accommodations or coming face to face with inaccessibility and ableism. There’s a reason I was the one asked to give our department talk on disability advocacy this week, and a reason that I talked about things that a room full of disability professionals, many of whom have many years of experience on me working with children with disabilities, had never heard before.

So it’s probably a combination of membership and mission, but it works. And so for the duration of the dinner the night before, the meeting itself, and a dinner following the meeting, no one offered me any help. I heard one person being offered help, once, who accepted. I grabbed a door for a person, once, because I was also grabbing it for myself lest we both got locked out when it closed. Mostly people were left to their own devices. It was divine.

And I was a mess, particularly by the dinner after the meeting. I was walking more slowly than usual (not that they knew my baseline). I jumped every time a flash photograph was taken in the restaurant where other diners were celebrating birthdays. By the end of dinner, I was pretty much zoned out from the ambient music, on top of the day, on top of the month. I fingered my necklace and rocked for a good part of dinner. Someone looked at me once as though she was going to ask if I was OK, and then didn’t. I was grateful not to have had to try to answer the question.

I asked for, and was found a chair without wheels to sit at during the meeting. It seems that wheelie chairs have proliferated exponentially in meeting spaces over the past few years, yet another example of progress leading to less accessibility rather than more. I have reason to distrust any chair with wheels that does not also have brakes. If a wheelless chair had not been available, I would have sat on the floor during the meeting itself. At one point, after the actual meeting when some of us were observing a medical student workshop on disability, I did sit on the floor. No one offered me a chair. No one asked if I were all right. No one tried to help me up. People continued to talk to me from their standing or chair-seated positions. It was like they recognized that I knew what chairs were and could access one if needed without their intervention. I have trained my coworkers to the same level of nonchalance, but it’s taken years. These were virtual strangers.

I was asked for help a few times. Someone needed a document e-mailed to people at the meeting but could not do it from her mobile device and asked if I could do so with my computer. I did, although I needed someone to provide me a few of the e-mail addresses. Someone asked if anyone had any Advil, which I did. And I volunteered to provide a typed transcription of the meeting for a participant with a hearing impairment who was going to join via internet link. He ended up not participating. I was sort of disappointed not to be able to use my disability typing superpower.

People who offer help mean it kindly. They want to be, well, helpful. As someone in a “helping profession” I understand the instinct. So of course one needs to recognize this and be kind back. But it’s tiring. Even if they only offer once, someone else is sure to offer later, and needs the same polite refusal, as does the next person and the next and the one after that. It’s a lot of extra social interaction for someone who wasn’t necessarily looking for extra social interaction, part of the social tax for having a visible disability. And they typically don’t offer once. They offer, you refuse, they offer again, ask if you’re sure, tell you it’s no problem. And of course, it’s 100 times better that they offer than that they insist.

Often, when I am doing things visibly differently, the “disabled way” is when I need help the least. The problem is usually solved at that point, if it could even be described as a problem in the first place. The last thing I need is for someone to grab I door I am currently opening or a suitcase I am currently holding. I look laden down with my luggage rack full of stuff, but I am using the luggage rack precisely so I can manage my stuff independently. It’s not a matter of “pride” or “wanting to be independent,” but just doing things myself because I can and why waste valuable help on things I don’t need? I more often need help with fine motor things than with gross motor ones, anyway. The cane confuses people because my hands have always been more significantly disabled than my legs, so I mostly need the same help I used to need before I had any visible disability markers at all, and I still have to convince people my hands won’t do what is expected of them.

In fact, the times when I actually do need help, I generally don’t appear to be struggling or even often doing anything at all. If I need help opening something, the chances are pretty good that I’m not sitting there struggling with it because I’ve already tried all the independent options and moved on to the phase where am deciding who and how to ask for assistance. Pushing my hands leads to loss of function for a sustained period of time, so I don’t generally bother. So when I do need help, it is by presenting the problem very specifically to a target person, and asking them to perform a very specific motor task. Until I ask, observers generally don’t even realize it’s a task I need done. These days, it seems that I need more help with touch screens than with anything else. I don’t look as though I am struggling with touch screens. Rather I am going up to people, telling them I can’t use their touch screens and asking them to provide alternative access to the service that is only available to those with the magic touch. (Another example of progress inaccessibiling me out. . . ) These increasingly frequent conversations don’t tend to go well, which is ironic when they occur at an airport, where people would eagerly “help” me with a wheelchair I don’t need, or at a pharmacy where customer assistance should be in the job description.

Star Ford wrote a great piece about the sort of help autistic people tend to need, and noted that it is often articulated very specifically:
“a ride to downtown, fixing my internet connection, a piece of fabric with 2 inch yellow stripes, someone to go with me to an office on Tuesday morning, a weighted vest, a quiet room. Notice these things we need are highly specific and individualized. That’s one thing I’ve learned from just listening: autistic people very often articulate in detail the exact thing they need at that time.”

I find that tends to be true of people with disabilities as a whole. We generally know what we need, and it’s very seldom what non-disabled people offer us. I recall the narrative I read, years ago, of a blind man who asked a passing pedestrian simply to tell him the name of the intersection at which he was located. They wanted to know where he was trying to go and kept trying to give him directions. It is distressingly common for wheelchair users to have others try to push them places they didn’t necessarily want to go. Just today I read an article written by a college student who tried using a wheelchair for a week to assess campus accessibility. (We’re going to table the discussion about all the problems with disability simulations for a minute.) He made the comment that “no one offered to help that first day.” Addressing the problem with disability simulations , a wheelchair-using blogger noted that “This gentleman’s fellow students were doing exactly as they should have been doing — presuming competence.” before outlining the usual consequences of unintended help ()

The best help I was ever offered in a professional setting, by the way, occurred during my first emergency medicine rotation during residency. Emergency medicine was undeniably a challenging area for me, given my specific impairments with manual skills and handwriting, especially at speed. Emergency medicine doctors are not terribly well known for their patience. In my prior experience, I had either been expected to do everything, or not expected to be able to do anything, neither of which were accurate assessments of my abilities nor leading to good care for the patients. One attending, who I learned months later has a close relative with a disability, said, “you'll have to tell me what you can and can't do.” She then listened to the answer, thus enabling me to do the things I could. By making the offer once, she opened the door for me to approach her as needed later.

My disability education group is important to me for so many reasons. We are doing work that matters to me, as I feel my patients with disabilities need me to teach their future health care providers about disability just as badly as they need me to provide direct clinical care. It’s a group that has used my strengths in teaching and writing to good effect. It is a group which speaks about people with disabilities, specifically and generally, individually and collectively with respect.

And it’s a model space for me, one where it is safe to have a disability without being a space exclusively of and for people with disabilities, a reminder I sorely need that such spaces exist. I generally only experience that feeling in disability spaces, or in spaces where I know people well. How rare was this space where competence is presumed as default, so I had the freedom to do things the disability way without comment or concern.

I was so worn out by the cumulative effect of a month of travel that by the end of dinner, I was surprised I hadn’t toppled over and could still put together a grammatical sentence. I suspect the main reason was that I only had to focus on my own needs, social interaction and the actual business of the meeting. I didn’t have to put any additional bandwidth into being Disabled Around People.

That’s a day I will get on an airplane for, every year.