The Struggle of Invisible Disabilities

For as long as I can remember, I’ve been “different”. Diagnosed with autism (“Aspergers” as it was called at the time) at the age of 5, I’ve always been more vulnerable, more sensitive to the world around me than anybody else I know, and as such, more susceptible to pain, abuse, bullying, and even certain additional conditions and symptoms which have emerged, likely in part as a result of that trauma, which might on their surface appear psychosomatic in nature, but are very real to me. 

One of those disabilities that emerged when I was only 7 years old is an extremely rare anxiety disorder called bathmophobia. Bathmophobia is the fear of stairs and slopes. It can be rooted in trauma (such as falling down a flight of stairs, something which happened to me when I was in elementary school), a fear of heights (a phobia which I also have), or a genetic predisposition to anxiety (and anxiety does run in my family). 

As you might imagine, considering all the factors for developing this condition, my case is quite chronic. I can only climb or descend about 2 or 3 steps at most before the panic sets in, and even that depends on the depth or height of those steps, the specific context. 

The range of symptoms I experience mimics that of a panic attack, with shortness of breath and rapid heart rate, sweating, and trembling, feelings of intense fear, as well as vertigo that makes me feel lightheaded, dizzy, and on the verge of passing out. The symptoms are so intense that the only coping strategy I have found to this point is simply the avoidance of stairs.

Bathmophobia has affected my life in the sense that, as an avid concertgoer, who also attends a number of other large events that match my interests, including baseball games, Broadway shows, and comic-cons, I always need to order handicapped accessible tickets and ask for accommodations, which can feel embarrassing and mortifying for me because I appear able-bodied on the surface. 

Asking an usher in a concert hall for access to the disabled seating is a very awkward experience for me, because I am generally not using crutches, a cane, a walker, or a wheelchair (though I did recently purchase a wheelchair for use in certain larger venues as my anxiety worsens, where lately I’ve wound up with vertigo symptoms as part of my hypersensitive sensory perceptions even just negotiating and navigating larger concourses, where being able to sit keeps me more grounded when I’m in a larger and more intimidating and imposing space with a lot of people) and the most obvious line of thinking for the majority of people is of course “if I don’t see it, it isn’t there”. 

If you get only one thing out of this article, I would like to implore anybody reading this to understand: there is no “one size fits all” experience with disability. 

Everyone’s disability looks different. I understand and empathize with the inclination to be protective of those whose disabilities manifest externally; of those where the physical symptoms of their disabilities are present to the naked eye. I understand the frustration and outrage if somebody who is 100% able-bodied, neurotypical, and has no reason to need any special accommodations requests those accommodations just because it’s more convenient, like they are getting a “better” seat in a concert hall or a “better” parking space that they don’t actually need. Obviously, to call that infuriating is an understatement. 

But if I tell you – or more realistically, my caregiver/companion tells you, because I’m an extreme introvert and self-advocacy in real time as I’m actively getting anxious is not my greatest strength – that I am autistic, have an anxiety disorder, and therefore can’t climb stairs, or need a particular accommodation, I implore you to show the same compassion that I would hope anybody with a heart would show to somebody with a more outwardly-presenting disability. 

With bathmophobia being such a rare condition, I’ve been accused before of making things up to get favorable treatment, to the point that I’ve resorted to just saying “I have vertigo” when requesting handicapped seating, seeing as vertigo is one of the symptoms I experience. But if somebody tells you they have a phobia, even if that phobia sounds unusual or atypical: believe them! Why would anybody make up a phobia to get seats in the mid-tier of an arena when they could’ve gotten a floor seat if they were able to descend the stairs to get onto the floor?

On a related note: A comment I’ve received plenty of times is “if this is psychological, if this is just an anxiety disorder, why can’t you just get over it?”. Ultimately, because my particular case is so chronic, so extreme, none of the therapies I’ve tried have worked. The recommended course of treatment for bathmophobia is exposure therapy, also called systematic desensitization. The method used in exposure therapy is to just confront you head-on with your fear in a controlled environment until you’re no longer afraid of it, like throwing a small child into the deep end of a pool until they’re forced to swim or they drown – which doesn’t sound like the kindest or most compassionate way of going about teaching a child to swim when you say it out loud, now, does it? 

Considering the severity of my vertigo and panic symptoms and the way my anxiety impacts my heart health, when confronted with a set of stairs to negotiate, I was not able to successfully complete systematic desensitization therapy. I’ve tried on numerous occasions. I’ve also tried hypnotherapy, but due to the nature of my overactive, racing, chaotic brain, and the fact that I have aphantasia (the inability to conjure mental images of particular scenes or emotions or ideas in your ‘mind’s eye’), the therapist was not able to put me under or get me to imagine a particular scene or feeling. 

People with aphantasia – “aphants” as we’re called – rely on words – verbal or written ideas – rather than images to process our emotions, and hypnotherapy is very visual, based on imagining particular scenarios. When taking systematic desensitization any further than I did was literal torture, and hypnosis was ineffective, unless I find some alternative form of treatment that presents a “miracle cure” for my anxiety disorder, I am only left with the option of avoidance, with attempting to navigate the world while avoiding stairs and steep slopes. As you might imagine, that can be quite debilitating and challenging, seeing as stairs and uneven, sloped terrain are everywhere. 

Although I’m hesitant to make this comparison as I don’t wish to come across as insensitive to those who rely on a mobility aid in their day-to-day lives in order to navigate the world due to a physical disability, including good friends and relatives of mine who’ve battled physical disability (which we will all experience at some point in our lives. As somebody with a lot of friends and relatives who are elderly, believe me when I say that I’ve seen people go from able-bodied to physically disabled in the blink of an eye, which is all the more reason why everyone should be more compassionate and accommodating), bathmophobia in a lot of ways is like being in a “psychological wheelchair”.

All I’m asking – to those who work at concert halls, arenas, stadiums and ballparks, theaters, etcetera – is to try to put yourselves in the shoes of a person like me whenever somebody approaches you and asks for accommodations, to not question “why do you need this accommodation?” if somebody who is clearly or visibly overwhelmed or in a state of distress (as I always am, when encountered with stairs) tells you they do. You might not see a wheelchair or a cane, but if you can read emotions, you can still see the ways in which I have suffered and struggled trying to live with this disability.

With that out of the way, and to conclude on a more bright, optimistic note: in the majority of cases, the venues I’ve attended have been more than glad to accommodate my needs, and I have been able to live a full, fulfilling life, attending concerts regularly in spite of my disability. My setlist.fm profile lists ‘377 concerts from 262 different artists’ in my attendance statistics, even one of which wouldn’t have been possible without special accommodations. As a die-hard Red Sox fan, I’ve had nothing but positive experiences with the Fenway Park box office as well. And along the way, I’ve been able to perform my own music at venues like the Buttonwood Tree and the Almost Famous Brewing Company (and many others) which were very supportive and accommodating not only of my bathmophobia but of my autism quirks as well. 

When I played the summer concert series in my hometown of Windsor, CT with my band, the organizers were nice enough to accommodate me by allowing me to set up in front of the stairs leading up to the Town Hall rather than at the top of them. I understand that I can be quite a complicated person, that it isn’t always easy to understand me, to accommodate me, to help me integrate with a society that is, for the most part, neurotypical, and expects a certain kind of behavior and presentation that is associated more with neurotypical personalities. 

Be it in my time in the tech workforce as a web developer, or especially my time gigging out around the local blues scene in New England, I’ve found that the majority of people who seem really confident – really “in command” – are neurotypical. I come into the blues bars where all the neurotypical artists have been doing their thing for decades as the quirky, socially awkward autistic guy who is half the age of the majority of people there, and the overwhelming majority of people have been accepting and accommodating, but not everyone. Some people seem to have this attitude of “who the f*** is this nerd?”. I’ve come to understand that this is just part of being on the spectrum in a society dominated by neurotypicals. 

I implore everyone reading this to be more patient, more kind, more accepting, more compassionate, but part of my continued personal growth has involved thickening my own skin as well, because – whether you’re disabled or 100% able-bodied and neurotypical – society isn’t always kind. It’s just the cold, hard truth, that some people can be callous and cruel. I like to believe that the overwhelming majority of people are kind, and that has been my experience, but it can be difficult for the unpleasant experiences with a small minority of people I meet along the way to not simply be all that I can think about and all that I can remember.

In the end, however, I choose to believe in the good of humanity.