AVC with a Disability: How I Did It

The lack of an author picture and an “anonymous” byline are neither accidents nor signs of shame. They are meant to convey a message: “Disability” has no particular face or name, as it can come in people of all appearances and probably does come in someone you already do know by name, whether you are aware of that person’s disability or not. Your picture of disability may involve a wheelchair (which is understandable, since the wheelchair is often used as a catch-all symbol for disability, on parking spaces and such), but so many disabilities are “hidden.” Mine are hidden, and they did not stop me from volunteering with AVC, from enjoying my time in Armenia, or from being welcomed and supported by AVC staff and participants.

 

My Diagnosis

I am a person with epilepsy (in case you are not familiar with the practice, it is preferred to “put the person before the disability,” with the more traditional phrasing “epileptic person” having fallen out of favor because it places disability before personhood). I did not know I was epileptic until quite an advanced age; a person needs to have had two unprovoked seizures (meaning they are not brought on by electrical shock) before a formal diagnosis, and I was already in my 30s when I had my first. Both of my seizures in my early 30s happened in public and occasioned embarrassment for me, since they can be very unsettling for uninformed observers and I myself had not yet come to terms with the condition. I was prescribed an antiepileptic drug that I have been taking daily (apart from rare oversights) ever since, and it also works out well for me that my seizure threshold must be naturally high– some unfortunate people with epilepsy have seizures with great regularity, despite being medicated.

Informing AVC

I voluntarily informed the director of AVC of my condition during the interview, and there was absolutely no change in her demeanor or other sign of suddenly feeling she ought to treat me differently. All she did was ask if I would be carrying with me enough medication to get me through my proposed stay in Armenia, and I let her know I had already made such provisions (on a side note to those planning to volunteer in Armenia who may need to get medication in the country, pharmacies are practically ubiquitous in Yerevan, clearly marked, and to all appearances professionally run). I cannot emphasize enough how much her steadiness right after my revelation convinced me that I would be in good hands in AVC. Her not batting an eyelash and immediately moving right into asking me if I would be coming with what I would need to stay safe and comfortable convinced me that I would not be stepping into an environment of judgment in which my productivity would be sapped. It sold me on AVC in the span of a second or two more than hours of marketing speak could.

Anyone with a disability must be mindful that he cannot sprint headlong into any situation without some precautions– but that same person with a disability should not feel “inferior” at this, since the truth is nobody else should be diving into any situation without some forethought either. I was only in one truly dangerous situation in my time in AVC, and it was ultimately one of my own creation. It happened in connection with one of AVC’s generally quite good Saturday excursions. In the weekly messages detailing the excursions, AVC invariably covers itself, morally and legally, by advising anyone going along to carry any needed medication. I never carried the medication with me on any excursion because I had long before conditioned my body to take it in early in the morning, hours before the excursion would even start. It just so happened that an excursion day was one of the very infrequent occasions on which I forgot to take the antiepileptic drug, and I did not realize as much until I was already on the bus. I did my best to enjoy the excursion in spite of this alarming discovery and got off on the right foot on our first stop, at an old religious site.

How I Overcame It

I unfortunately had a repeat of the delayed realization that I had made a critical mistake later in the same day. Around the middle of the excursion, we found ourselves visiting an Armenian ski resort in the summer to get a look at it off-season and ride the ski lifts up and down. People with epilepsy are advised to avoid heights (going so far as to avoid climbing ladders) because if a seizure suddenly strikes they could get seriously injured or perish. On the ride up the trail, I was too engrossed in what my fellow volunteers were saying to take stock of my situation; on the ride back down, when I was less engaged with the conversation, it struck me that I would be stuck in a terrifying situation for the next few minutes. The lift had a crossbar, but I almost had a panic attack at realizing that if I had a seizure I could easily slip out of my seat and underneath it, falling to my death on the terrain below and traumatizing other people to an unfathomable degree. I held onto the bar tightly and became much quieter until the low-speed, high-tension ride was mercifully over. Once on the ground, I said not a word to anyone else about the bullet I had just dodged, but internally I gave myself a ferocious tongue-lashing for having fired the bullet at myself in the first place. On a typical day when I had taken my medication, I should have embraced life and enjoyed the rides on the lifts as much as anyone else; on the isolated day when I had forgotten to take the medication, I should just have remained at the base camp, found ways to entertain myself there, and explained that I was uncomfortable with heights if at all pressed on the matter.

Are you ready to do the same?

AVC is of course more about volunteering than going on excursions, and I will report that my volunteering experience was pleasant, without going into the specifics which would compromise my “anonymity” here. AVC, as is their wont for all volunteers, let me weigh in on my own perceived strengths, making assignment suggestions of my own, before they determined what would work best for all parties involved. Their decision on what to do with me ended up being sound, since I could perform to my enjoyment and to the organization’s benefit without my status as a person with epilepsy ever being an issue. I am certain I am not the first person with a disability who volunteered successfully with AVC, and it is my sincerest hope that I do not end up being the last. Those with disabilities are officially “well-adjusted” once they have worked out how to minimize the impacts of their conditions on their lives, personal, professional, and in-between. I consider myself a well-adjusted person with a disability, and any other such person should fit right in with AVC. They are ready for you, if you are ready for them.

November 17, 2022