Hi. My name is Alisa Grishman. I’m 37 years old, I’m disabled, and I love it.
Giving you a moment here to digest that…
My disability is as beautiful to me as my storm cloud-grey eyes and my tattoos, and just as how I get annoyed at my hair for being frizzy or notice the little wrinkles playing around the corners of my mouth and the bridge of my nose, sometimes aspects of my disability can be frustrating. But I don’t love myself any less for having my birth mother’s beautiful halo of hair or wrinkly proof that I’ve spent much of my life smiling; why shouldn’t I also love all the ways in which my disability has made me the incredible human being I am today?
Unfortunately, learning to love my disability was a long and arduous process full of pain, denial, self-recrimination, depression, hopelessness, doubt… You name it, I’ve felt it.
One day, when I was 19 years old, the entire left side of my body became paralyzed over the course of about five minutes (hemiplegia). Panic ensued, chaos reigned, and by the end of the month I’d been brought to the doctor in case I was having a stroke, been told it was psychosomatic, gotten an MRI, been misdiagnosed with brain cancer, and finally been diagnosed with multiple sclerosis.
It’s hard for me to remember too much about how I felt at that time, but I know it involved being angry. Really, really, unbelievably angry. Angry at my parents for not believing me about stuff. Angry at doctors for getting things wrong. Angry at doctors for getting things right. Angry at my body for not being perfect. Angry at the universe for being So. Fucking. Unfair.
A journal entry I wrote in 2006 probably sums up everything I could possibly say about myself during those years:
Fuck. Fuck fuck fuck fuck fuck. God, this sucks. I hate my body, I hate my immune system, I hate everything about myself. I just want to hole up and kill myself and end all of this stupidity. Why can’t anything go right for me? … I’m not even 25 yet. This is so unfair. This is so fucking unfair.
I walked with a cane for some of college, then spent the rest of the time both passing for physically abled and constantly aware that something about me was different, which made it hard for me to really relate to other people my age. They didn’t know what it was like to have an incurable disease. I was completely alone and isolated and lost. After college my brief time working was in a job substantially below my skill and education levels because I was so scared that someone would find out about my disease and I wanted to be able to work as long as possible before I deteriorated too much to continue.
I know what you’re all thinking right here. That sounds kind of terrible, right? My diagnosis had made a horrible impact on my life. Wasn’t this supposed to be about loving my disability?
When a traumatic event occurred that caused me to leave my job for good five years later, I took some time to recover mentally and fully immerse in working with my therapist. At the time it felt like my focus was entirely on work-related post-traumatic stress disorder but in truth what I was learning to do was, in the words of my therapist, “accept myself as I was in that moment.”
Accept myself as I was in that moment.
It sounds like a simple concept, accepting who I was rather than pining for who I thought I should have been or wanted to be. At first all of my therapeutic self-work related to the trauma of what happened at work; accepting that I was still having nightmares rather than striving to not have them anymore, being at peace with my need to have my phone with me at all times in order to feel safe rather than pushing myself to leave it at home in a forced effort to make myself “better.” Over time, however, this acceptance of myself started to leak into what I’ve now determined to be truly the trauma of my diagnosis. I realize now that for more than a decade after my diagnosis I’d fought as hard as possible to “not have MS” and that denial had really started to negatively impact my mental health and my view of myself. With that realization and a developing acceptance of my physical limitations I began to feel free to actually, well, be disabled.
I got a walker. That was a huge step for me (no pun intended); after years of trying to hide anything “different” about myself I was suddenly exposed and unable to blend in. And after a short adjustment I was OK with that, and when my ego stopped getting the way I found I had only one obstacle left to contend with: Sidewalks.
Sidewalks, the bane of my existence. The cracks, the jumps, the trees, the trash cans… It feels like a sudden jump to go from beginning to accept to my disability to kvetching about sidewalks, but that’s really how it felt to me; almost the moment I’d sorted out my internal roadblocks, external hindrances came into sharp focus.
It was by complaining to the sidewalks that I met my dear friend, Richard Meritzer, the late ADA Coordinator for the City of Pittsburgh. Richard’s greatest gift (and he had so very many wonderful ones to choose from) was his ability to nurture people’s abilities and gently mold and encourage them to be their absolute best selves, and he introduced me to something that has become the most important concept in my entire life. Something that has, over time, helped me transform all of the pain I felt because of my disability to the pride I now feel in my ability to make a positive impact on the world.
To be continued in August…
Alisa Grishman is a disability activist and founder of Access Mob Pittsburgh, an advocacy group that utilizes positive approaches to making change, such as education and economic incentives. A self-described shameless agitator, Grishman has also been arrested multiple times fighting for disability rights with ADAPT, a national advocacy group.
Along with her direct advocacy work, Grishman co-runs Ballots for Patients and Care to Vote, sister efforts that respectively collect emergency absentee ballots from hospitalized peoples on election day and work with nursing and personal care homes to help residents register to vote and fill out ballots.
In 2017, Grishman ran Pittsburgh’s ADA Anniversary Rally, a celebration of the 27 years of the Americans with Disabilities Act that featured local speakers and a keynote address by Rep. Dan Miller.
Grishman’s work has been featured both locally in the Incline and WESA and nationally in the Huffington Post and Esquire Magazine. In 2019 she was chosen by the Incline and S&T Bank as one of their Who’s Next: Community Leaders and Activists honorees.
A Carnegie Mellon alumna, Grishman resides in Uptown.