The last few days have been chill and wet. The drought has passed for the moment, and the rivers and lakes are full.

Recently, I had a brief conversation with an acquaintance about empathy. She shared that while she is proud to be highly emphatic, that very empathy often proves troublesome as she tends to subvert her needs as she strives to care for others. It is, she noted, a conundrum for her.

This conversation set me to thinking about the other night when I attended, or rather tried to attend, a large professional gathering centered around food. There were several serving stations where caterers offered a wide selection of dinner options. The servings were small, yet the tapas like menu was abundant.

When we arrived a thick crowd had congregated in the midst of the serving area. I was on crutches, which in order to serve myself and eat, I must put down. However, given my lack of balance, I need the crutches in order to navigate the jostling and bumping that occurs  in chaotic, crowded spaces. I could have asked Jennie to get my food, and she would have graciously and lovingly done so, but in order for that to work I would have had to repeatedly navigate the crowd so that I could identify, and choose, food items. After assessing the situation I decided to rest for a few minutes and allow the melee to subside.

Jennie chose to mingle and after half an hour or so came to find me so we could again try to eat. By this time the crowd had thinned and the food was easily accessible. Sadly, however, the caterers were beginning to put everything away. I stood there, watching various dishes being carted. While here was considerable food remaining, I found myself stopped short, completely overwhelmed and frozen into inaction. After a couple of minutes I suggested we leave.

It was not until the next morning that I was able to identify the powerful underlying emotions that drove my incapacity; they were shame, sadness, and anger, familiar companions on this life’s journey. Sadly, the evening event had proven fertile ground for several of my deeply felt hurts and grievances.

The group involved makes much of being inclusive, and genuinely see themselves as being so, yet I consistently find them deeply Ablist and profoundly Eurocentric.  Since contracting Polio at the age of seven, I have too often been marginalized by good and kind people, and the confusion and shame that accompany that are a too familiar source of pain. I know the emotions and memories that are stirred in me by acts of ablism and marginalization are often incomprehensible to otherwise emphatic friends and colleagues, and I frequently find myself torn between speaking up and remaining silent. I am also well-trained to be a “good cripple” and must continually decide whether to be likeable or honest.

I try to have empathy for those whose decisions place me in humiliating situations. Truth is, I’ve planned conferences and large professional gatherings and know how difficult, and often thankless, that task is. If I did not know how challenging it is to for mobility or sight impaired people to navigate unruly crowds, I would likely not think about the layout of a serving space; even knowing, I blunder. It is exceedingly hard to enter into someone else’ experience, not matter how we may try.

I would very much like to live in a world where my needs and experience matter, and where inclusion trumps disability, but it seems increasingly unlike this will happen in this lifetime.

10 thoughts on “Inaccessible

  1. I suppose one way to cope is to make your world smaller and surround yourself with people you trust, to whom your needs and experiences matter and your inclusion is paramount. But then, I believe both worlds would be diminished. Not everyone agrees with that. Do you progress to complexity or to simplicity? Progressing to complexity takes a lot of work. Making a mess of atoms into a fertilized egg is not as easy as making an egg into a scrambled breakfast. We could have a meal, or we could have a life. How much work do we want to put in?

    1. Priscilla, I must admit that after 60 plus years of advocacy, I am not feeling particularly expansive. Still, I continue to do what I am able to do to change things. M personal belief is that professional organizations in mental health are particularly difficult as they believe they know what is needed yet consistently make only the most modest of accommodations.

      1. This reminds me of M. Scott Peck’s idea that original sin is laziness. It takes effort to love, and to work toward emotional maturity. How to and who to invite/encourage/challenge us all to do that work? It goes on…

      2. Priscilla, I am a bit leery of ideas about laziness. I do think that questions of accessibility require some hard thinking and often, difficult choices. I wonder whether prejudice and fear are bigger obstacles to change, along with greed, than laziness, but then……

  2. Hi Michael… For some reason I am feeling very humbled as I sit here with you. I am reading a novel called The Golden Age. This is the name of the rehabilitation hospital for polio victims and the main character is a 13 year old Jewish boy. I good portion of my mind is wrapped within his experience right now and reading your post was powerful. I read it first yesterday but couldn’t respond and today I could only read it very slowly, tasting and feeling your word over and over again. I honestly don’t have anything to say, probably because you are only the victim of the social problem that we do things too big, are too busy, march to a too fast drum beat, and are bound within the perspective of our own bodies (self-centeredness) to be accommodating to those who have different needs. And this reality is probably being amplified by the fact that you are losing abilities due to the effect of the aging process on your ravaged body. Thanks for sharing yourself in this very intimate way.

    1. Pat, I loved The Golden Age and wrote about is a few weeks ago. Yes, we do age and that process does make the everyday tasks of living ever more challenging. Still, every now and again I find myself surprised by someone’s generosity. At the conference in Florida there were the usual ablist moments, but there were also moments of inclusion and generosity which warmed my heart. I am grateful for them!

  3. Michael, accessibility is such a crucial issue and you have described the emotional challenges so compellingly. It’s troubling that this topic, which has long been a focus of thoughtful research, has been marginalized and ignored. I’ts something I valued when I studied gerontology and went on to work in the area of housing policy, among other issues, for a state bureau on aging. The way we continue to build houses and other buildings or services simply doesn’t make sense for anyone over the course of a lifespan. I still value the work of M. Powell Lawton and Lucille Nahemow: You may already be familiar with their model. They developed a very helpful way of shifting the problem away from individual deficiency to social/built environmental/structural constraints.

    1. Carol, I was not aware of where this model had originated, so was pleased to look at their ideas. Yes, so much of disability is crated, rather than inherent. I had a meeting this morning during which we were trying to assess the degree to which a disability was self imposed, and how much arose from all those other factors. IN the end, we decided the disability was primarily socially constructed, and the person’s inability to be creative in response to that was somewhat self imposed, but a logical outgrowth of lack of appropriate support. Once again we circled back to a model of complexity, a model that changes all that seems easy and apparent. I rather like it!

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