My Struggle, My Triumph: What They Are and What They Are Not

I had lunch with a friend, also a wheelchair user, over the weekend.  Our discussion was wide-ranging, and spanned a number of hours, and somehow, amidst to the acknowledgment of the crazy roads that we’d traveled, the uncertain mortality faced by all human beings but perhaps more present to those of us who are medically different, and our goals for our lives, both in the moment and in the long term, we came to the question of inspiration. I don’t know anyone with a disability who doesn’t feel some hostility toward the concept that we call inspiration porn.  You’ve all seen it, the stories with tear jerking quotes by brightly smiling families, the halo almost visible as an author or journalist floors us with their epic tale.  Oh the struggle.  That they even get up in the morning.  We should be so strong.  Gag.

Most of us get up in the morning because the alternative is to stay in bed and vegetate.  Those of us that have been able to build lives are the lucky ones, precisely because it means that we get to truly live.

I may not love that I have to get up at 5:30 AM every day to wrestle with a recalcitrant digestive tract just to be able to start my work day at 930 or 10 like everybody else, but at least I can, and it has allowed me to build a profession.  It is frustrating to have to rely on other people for my basic needs, but at least I have those people, and the funds to pay them.  Don’t canonize me, rather shake your head as you realize that I am one of the lucky ones.

Still, as my friend pointed out, those of us that do it may, in fact, have some duty to inspire.  Not to inspire in the way of these flashy tales of triumph.  Not to inspire by setting our tragic nobility against the symbol humdrum problems of the average reader.  (And who are we to know what the average reader is experiencing behind closed doors?)  But to inspire by stretching the idea of the possible.  This would be an achievement of a life well lived.

I am a person with a severe disability.  I use a wheelchair, and I need the help of other people to dress and to shower, to get in and out of bed, to use the toilet, and prepare and obtain food.  Yet, I am a lawyer, and a former federal official.  I have worked for a Fortune 500 company and an AmLaw 100 law firm.  I am currently following the early 21st century version of the American dream, as I balance a search for traditional legal positions with the idea of starting on my own business.

Similarly, my friend has even more physical limitations than I do, and yet he has had a successful law career and is now seeking a Masters of Public Administration from Harvard’s John F. Kennedy School of Government.  I would love for the take away from our experiences is to be an expansion of the idea of what particular disabilities allow.

It is folly, and offensive to both compared parties, to say “Matan did X with his disabilities, therefore you should too.”  We each have our own abilities, and my accomplishments, or those of my friends, should never be used to set expectations, or worse to shame someone in an apparently comparable or seemingly easier circumstance.

But, there is a middle ground.  To see what I or my friend has accomplished is hopefully to realize that disabilities are not per se disqualifications from these accomplishments.  I am second by the idea of my life being used to tell someone else what they should be doing, but I love the idea that it might expand their view of their options.

Caught up in this is an acknowledgment of the struggle.  People should know that it is often more difficult to accomplish the same things with a disability.  I candidly share the length of my routines, the fact that everything I do requires the coordination of the schedules of multiple people, and, that though I am very much in charge of my own life, my choices are restricted by the needs of my body and the realities of hiring people on a schedule to meet those needs.

I can’t sleep late without extensive planning because someone is hired to get me up at a specific time, and I can vary their job on a whim.  Staying up beyond a certain time is a major planning exercise, as my assistants have shifts that end, and even if I can pay them stay longer, are dependent on public transportation, or their own need to get up in the morning.  We won’t even talk about how many things in life just hurt.  I know very few people with disabilities for whom a certain amount of extra pain is not simply a daily reality.

Why is it important that this be known?  Several reasons.  First, there is the very human need to know that these experiences are shared.  Even as another person with a disability looks at my accomplishments as a guide to the possible, they should hear of my difficulties to know that, when they experience something similar, they are not alone.

There is another reason, however, that this is important.  I learned a very valuable lesson from my first boss.  He told me that I should always treat difficult people in meetings with patience and respect.  Not only is it the only way to get anything done, but I have no idea what else that happened in their day before they got this meeting that is expressing itself in their behavior.  Inherent in this is the notion of coloring all of our interactions with an acknowledgment of the life experience of our fellows.

When it comes to people similar to ourselves, we do this imperfectly, but at least we have a basis for comparison.  When it comes to people with a significantly different life experience, like people with disabilities for those without, I humbly submit that we lack even a starting point.  I need to share some of my struggle with you, not for your sympathy, but because otherwise you have no idea from where I’m coming.

A request to never have a meeting before 10 o’clock sounds awfully strange until you know about my four-hour morning routine.  A request to preplan evening ending times only makes sense once you realize that I need to coordinate the schedules of the folks who will meet my needs and put me to bed.

So then, here is what I offer of my struggles and accomplishments.  See my accomplishments, not to canonize me but to expand your view of the possible.  See my struggles, not to drown me in sympathy but to appreciate where I’m coming from.  Disability or no, we all seek to be seen for who and what we really are.