May is EDS (Ehlers-Danlos Syndrome) Awareness Month, and it has become an annual tradition for me to write about it. If you haven’t done so already and have a few more minutes to spare, click here to read last year’s post, in which I discussed the condition and how it relates to a sense of belonging. EDS is a genetic connective tissue disorder that, depending on the type a person has, carries with it symptoms ranging from fragile skin to joint hypermobility to strong risk of arterial rupture. I am fortunate to be free of that last symptom, but the other two have been part of my daily life from day one. Thanks for lending an ear (eye) here, as I discuss the way having this “invisible” and largely misunderstood (or, more often, completely unknown) condition intersects with the world of accommodations for people with disabilities.

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Our society (in the U.S.A. at least) has come a long way in terms of accepting the notion of accommodations for the disabled. Of course we need wheelchair accessibility, and of course it makes sense to have Braille in elevators and of course qualified people should not be denied employment or educational opportunities because they have disabilities that will be inconvenient for others to accommodate. Accepting these as truths of a humane society is a relatively recent phenomenon, though, and it’s a lot easier to stand behind clear-cut examples like the ones I just gave than it is to address the gut reaction many people have to the healthy-looking person taking the handicapped spot in a parking lot and walking into the store without a cane or wheelchair (if it’s someone with EDS, that may be the bodily equivalent of a half-mile walk and that may be that person’s only time spent out of a wheelchair that day). Really, the world we inhabit falls in a very ambiguous place between the extremes of “make sure everyone has the chance to thrive” and “survival of the fittest.”

At my first EDNF (Ehlers-Danlos National Foundation) conference in 2002, I met a music student who had to change majors because a required course was only offered on the second floor of a wheelchair-inaccessible building, with no alternatives offered by the department. I think anybody compassionate enough to read this far can agree that this is just wrong and represents a college (which I will decline to name) failing to meet its legal obligations. Many others with EDS, however, look and act sufficiently normal that folks have a hard time processing the idea that there is a legitimate disability. One of the saddest things about this to me is how it encourages the EDS-sufferer to push beyond what is physically appropriate because the resulting physical suffering seems preferable to the social or professional consequences of being “high-maintenance.” If you have reason to doubt that people will understand and accept why you have been granted a copy of the elevator key, you might just take the stairs and pay for it with your hips, knees and ankles later. If you are around able-bodied people who are on their feet for hours (and are tired as a result), will you feel morally entitled to sit? If so, will you be immune to the potential for resentment and other social backlash, subtle as it may be?

These sorts of questions can become convoluted – last year when I made the (very careful) step of returning to tennis playing, my physical concerns were compounded by concern over whether people would assume that I was “all better” (or, worse, had been exaggerating the severity of my issues all along). Like many with EDS, I inhabit a somewhat amorphous middle-ground between able-bodied and disabled. I look normal and am not totally disabled (whatever that means), but my body’s ability to function is in many ways impaired. There is an irony to my existence, in that I put a lot of time and energy to maintain my physical health to the point where I can assimilate into the world of the able-bodied, but if I actually act as though I’m able bodied, that compromises everything. So I control my diet, sleep, physical activities and so on, and as a result I am almost as healthy as if I were “normal.” It is as if I am working hard to hang on to my membership to the “able-bodied club,” though once I walk through that club’s doors, I have a limited capacity to experience the perks. After all, normal people can spend a late night at a club, have a beer and a burger while sitting on a hard barstool, and not pay for it – for me, any one of those activities has an impact significantly greater than for a “normal” person. So it’s a good thing that being a jazz musician doesn’t require late nights and provides almost total control over things like equipment, diet and amount and type of physical exertion and that all jazz gigs are governed by the ADA (Americans with Disabilities Act), ensuring that anyone with physical challenges is accommodated accordingly, both during the gig and in the hiring process. Oh, wait . . .

For obvious reasons, my professional ambitions are often at odds with my physical reality. I like to think I do a good job of finding creative solutions, though ultimately respecting my body’s needs. I am, however, hardly so enlightened that I’m immune to struggling with these issues. An example that comes to mind is the ring splints that I began wearing to play the piano in 2004, and which have unquestionably extended my performance career. While I had some skepticism that they would help (which, thankfully, proved to be totally wrong), there was also a lot of other resistance in there. Specifically, I had worked hard to develop my technique to overcome EDS and play on a level that I felt legitimately represented my love for the music and the work and study that I’d done. Here I was, though, considering a pile of metal to diminish the pain and fatigue in my fingers. I wondered “Is this fair?” After all, no other accomplished jazz pianist in my age group wears splints on his or her fingers. So if I can only ply my trade with large amounts of metal bracing, doesn’t that cheapen anything I subsequently accomplish?

Fortunately this narrative is not the dominant one in my mind, or else I would have continued to resist the ring splints on principle . . . and very likely would have either quit performing several years ago or at best would have continued to do so in an impaired and unnecessarily painful manner. Or at the very least my last 4 albums would have been released with stickers on the covers offering the disclaimer “the music here is fraudulent, hope you enjoy it anyway.” But it’s striking that I’m vulnerable to these thought patterns, even after years of working internally on these issues and even with a spouse and a large circle of friends and colleagues who consistently reinforce the notions that my ability to still play is beneficial to everyone and that I gain nothing and help nobody when I push my body beyond what it can handle. As of this writing, I can play for only minutes without my splints before my fingers begin to throb and crumple, yet I was seriously considering saying no to the splints that make it possible to keep playing. What, then, about the people whose environments and communities actually reinforce this kind of thinking? Worse yet, what about those who are in that situation and don’t yet have the diagnosis to explain the fragility of their bodies? By some calculations, 80% or more of those with EDS never get an accurate diagnosis, and thus spend their lives with no real explanation to validate or legitimize the reality of their physical suffering.

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I’m sure others have studied this phenomenon more thoroughly and more intelligently than I have, but I have observed two common mindsets that particularly seem to foster intolerance (whether subtly or dramatically) towards accommodations for less-obvious challenges.

1) If someone can get by without accommodations, doesn’t that make them unnecessary? Furthermore, accepting unnecessary accommodations reflects poorly that person, who must therefore be lazy, a hypochondriac, or somehow trying to evade responsibility. Have people forgotten how to just suck it up and show some strength?

You and I both know people of whom this is, in fact, true in some way. Sure there are people who are looking for the easy way out, even people with disabilities who “milk” them, and it is frustrating to see this. However, there are a lot of people who aren’t like this. And I know for a fact that there are a lot of people with EDS for whom this sort of “taking the easy way” couldn’t be farther from the truth. Over the last 10 years I have been blessed to build a wide circle of EDS friends who would like nothing more than to thrive doing the things that are important to them. From the small business owner to the biochemist to the dentist to the mom who can no longer lift her child . . . is it really plausible to think that these people enjoy being stripped of their physical self-sufficiency? That having other people (or machines) do things they used to do themselves represents some sort of luxury? Rather than being branded as weak, shouldn’t people in this predicament be celebrated for the immense amount of strength that allows them to continue to live their lives in a resourceful and dignified manner?

2) Resources are finite and my own interests must be protected. By that logic, any opportunity or accommodation afforded to somebody else imperils my own well-being. If someone else gets a gig or a grant or a job, that’s money out of my pocket. If they get those things with the aid of accommodations that were not available to me, it’s not only threatening but it’s unfair!

This second phenomenon started to become clear in my mind a few years ago through a circumstance unrelated to disability. As a foster and adoptive parent, my daughters have access to some state subsidies for their college educations. On numerous occasions I have mentioned this to people (invariably parents of kids at or approaching college age themselves) and gotten the response “wow, what do I have to do to get MY kid into that program?” You may be shocked by that response or you may have actually thought the same thing yourself, and my point is not to vilify those folks for their insensitivity, but rather to illustrate their feeling somehow gypped by the fact that other children are getting this opportunity that their children are being denied. Never mind that the folks making these comments are intelligent people who, with a second sober thought, would realize that any kid who has access to these subsidies has endured trauma and loss that no decent human would wish upon his own children.

If you’re feeling bad about your lot in life (either in general or in an isolated moment of self-pity, however justified), it’s human nature to resent those who you perceive to have been granted things that makes their lives easier, especially if they don’t “deserve” it more than you. As such, this particular mindset is a very emotional one that tends not to make a lot of rational sense. Someone taking that handicapped spot probably doesn’t directly impact your well-being regardless of the legitimacy of his handicap. But if that’s just another piece of proof that others are getting a free lunch while you’re being left to toil, those feelings can come out in pretty intense ways.

And you know what? Those of us with EDS endure enough on a daily basis that we don’t need to be resented, on top of it all, for attempting to better manage our obstacles. Or, depending on your perspective, maybe we do and I’m just being a pansy by even saying so . . .

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So what’s the solution to this? If I knew, I would’ve fixed it by now. Workin’ on it. I do know two things, however.

1) If more people know about EDS, things will be a lot easier for those of us who have it. Thank you for reading on and if you have the opportunity to share it, even better.

2) If people stop and acknowledge the impossibility of understanding the suffering of a stranger, this will be a more tolerant world, and one in which EDS sufferers are given the space to maximize our ability to live and contribute to society with fewer physical and social barriers. Sounds good, eh?

6 Responses

  • Jennie Howland

    Hi Noah,

    Thanks again for another thought provoking blog. I can relate on a different level to your themes of identity as well as the poignant thoughts you shared about other people’s judgements and your own self judgement. Invisible disabilities are indeed hard for others to understand. Also, nobody can know your limits but you. You reminded me of a similar story from someone with MS regarding a complete stranger making comments about her handicap permit, thinking she didn’t deserve it.

    I hope we get to see you and Kate sometime soon.

    Namaste,
    Jennie

  • Sandra

    Thank you, Noah. Your eloquent discussion really explains the conflicting emotions I feel when dealing with accomodations for myself or family members. Thank you for taking the time to write and share this. I will pass it on!
    Sandra

  • Kelly

    Thanks for taking the time to write this. I’m glad you didn’t quit playing. The world would be a less beautiful place if you had.

  • Danny

    Thank You for expressing so vividly the world that we are held prisoner in, I myself did not find out until I was 51 and although like yourself I was affected as far back as I can remember I was forced to face the world as a “normal person” which tested my very limits of endurance every day as a child and made it such a dark place that I can never even think back to that period without the darkness engulfing me all over again.

    But for whatever reason we were destined to be created this way I do believe it makes us very special people, and as I am sure you have noticed through all of the others in your EDS group maybe we would not be as special as we are unless we had faced such adversity and managed to come through it still with a smile on our faces and a warmth to try to make sure no-one else has to face such a thing if we can help it. Best Wishes!

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