Below are some excerpts of an interview with Meriah Nichols and Alice Wong for the Disability Visibility Project. Their interview was recorded at StoryCorps San Francisco on November 1, 2014. These excerpts have been edited for space.
Becoming disabled at an early age
Meriah: Well, I’m originally from the Bay area, fifth or sixth generation something, you know, and my parents moved to Cloverdale to have a sheep ranch and to start this different way of living really to escape the Bay Area. And, when we were in Cloverdale, in the sheep ranch, we got into a really, really bad car accident. I went through the windshield of a car when I was four, out there. And that’s what gave me the brain injury, auditory processing disorder all of that. And my deafness was very gradual. And so, of course, it started off with a, with a slight hearing loss and just went more, more, more, more. Now, I’m profoundly deaf but, but it took a long time to get to where I am now.
Meriah: And that’s also why my speech is clear. Because I wasn’t born Deaf.
And then my parents converted to the Bahai faith shortly after the car accident. I think the car accident had a big it was a big push towards spirituality for my mom and, and she went that route. And then they decided they wanted to be missionaries and so they sold everything and we moved to the Fiji Islands.
And I was about six, seven years old, around there, when we moved to Fiji. And it was interesting because before we moved to Fiji, everything was about my scars. I had scars all over my face and you know, they were white, so they showed up vividly, and my hair was shaved and scars on my head and stuff.
And I had plastic surgery later but all this was just mass scar tissue before. So, everything revolved around my scars, and having thick glasses and so forth…And then we moved to [LAUGH] Fiji, and that was the last thing on anybody’s mind. It was, it was this, this, it, nothing mattered. Nothing like that mattered… It was my skin color that was the main issue.
On requesting for ASL interpreters at major events and in the workplace
Alice: I remember one of your blog posts you recently went to a National Down Syndrome Conference, and you told me how, in your blog post you wrote really, you know, eloquently about how exhausting it is to lip read and that it really takes a lot of focus And concentration, and you really can’t absorb multiple people talking, conversations, the way hearing people always are talking over each other, interjecting and you really kind of have to, you miss out part of it and at this conference you went to, that they provided you with interpreters throughout the entire time and, you know, that’s not always gonna happen in a lot of conferences. So, tell me about, I guess, that kind of process in terms of requesting those accommodations and how that really helped you as a conference participant who’s Deaf to really participate among other people.
Meriah: It’s just because I’ve made such a stink about other stuff with Down’s Syndrome that they knew I was coming and they were like let’s get the interpreters for Mariah, but that’s really it. I think for other things it can be definitely be an issue because of expense. It’s very expensive and people resist it and they say, “Oh well everyone lip reads. All Deaf people lip read. It will be fine for you.” It’s okay, but no. And there’s so many meetings that I’ve, I’ve wanted to have an interpreter for, and it hasn’t pulled through or it didn’t happen and it’s, and then it all, that baton always ends up being held by the Deaf person, like it’s our responsibility to be able to figure it out somehow, like.
Alice: And, it’s ironic because, you know, under the ADA, especially under, let’s say, you know, healthcare appointments and things like that, you know, people are required by law to provide interpreters. So, how is it for you in terms of we have this law and supposedly, you know, ensure access, and yet, for so many people it still doesn’t really work because there’s so many barriers in terms of ignorance, and just resistance.
Challenges in obtaining accommodations, ableist attitudes, and the impact on power dynamics between worker/employer
Meriah: So, what is it like when you attempt to, constant kinda pushing for interpreters? And well, I can’t even say I’ve been constant with it, because I feel guilty. I mean, I feel like I don’t wanna put people out of the way, you know? It’s taken me a long time to be more confident in this, you know? At UC Berkeley [previous employer]? You kidding? I never asked for that. It was just, it was, put, my boss way out of the line. It’d be, it’d be, you know, difficult for them. It’s just, when there was a large gathering or if it was a, you know, large function then yeah okay, but for staff meetings for things like that, I would never ask for that.
Alice: And what do you think are, you know, some of the underlying reasons that employees really hesitate to request for interpreters? …there’s a cost…there’s also this weird dynamic between you and the supervisor, but, you know, tell me a little more about-
Meriah: That look on their face.
Meriah: Yeah, the look on their face. That look of annoyance, of like, “God I can’t believe you’re doing this to me.” That look of being put out. That look that you’re, you’re, you’re being difficult. You know, “Why can’t you just do it, you know?”
I remember my first job that I finally got here in the Bay Area, after Japan was as Job Developer. And I needed this thing on the phone it was about 12 dollars…in order to hear on the phone, and it when I asked my boss for that, that, just that look on her face of being so put out, so annoyed with me, so, so irate. You know, I could just feel that, that my heart sink, you know, and know that I, I, I couldn’t ask for, for more.
Alice: And how did that make you feel as a person with a disability that’s trying to do her job?
Meriah: Made me feel like crying.
Alice: And I think this is where a lot of people don’t understand that it’s already so tough enough to find work…and to keep work.
Alice: That on top of that. It does feel like the burden…falls on the individual, and that’s always our fault or our responsibility, our, our guilt…and, you know, that’s really, it should be a shared responsibility, and mostly that burden should be on supervisors and employers. So, do you think there could have been anything that could have been done to improve those kind of attitudes toward accommodations?
Alice: … do you think there’s could have been anything done to improve those employer attitudes?
Meriah: There’s so many things that can be done. I mean it goes it’s one of those chicken and the egg too. Or, or maybe even deeper than that. It’s just… so fundamental. It’s about a way of viewing people. It’s about seeing value in all people, and that all people are going to need to work and learn in unique ways.
And, and that’s just good. I mean, the thing that always frustrated me before I was a Human Resource manager, I worked as a teacher and if you’re a good teacher, you know all your kids are gonna learn in a different way…not every one learns in the same set way and then when you’re in, in Human Resource management, everybody works or they will perform better in slightly different ways. Some people will, will do a much better job if they can listen to music. Some people will do a much better job if they can look at a, a plant when they’re working or you know, it’s different little tweaks. And then you, you have disability in a picture and people think it’s this great big thing, when really it’s not. Most of the time it’s very simple. Most of the time…there are things that should be done for everybody. It’s just good, good human resource management. And that was frustrating for me because in that particular job I brought so much to the table, you know…but, I needed a device, to be able to hear on the phone. I mean.
Meriah: What is that? Like, when you weigh against what I was bringing to the table? It’s just…it kind of blows my mind.
Meriah Nichols blogs about Deaf culture, Down Syndrome, travel and disability. Her blog, A Little Moxie, covers ‘stories related to one travel-hungry deaf mother finding her way through parenting three children, one with Down syndrome.’
Meriah’s A Little Moxie blog: http://www.meriahnichols.com