Aimee Elber on disability storytelling

Listen to this post by Aimee Elber and Cheryl Green:

As you might have seen or heard through all the disability-related blogs and newsletters recently, the Disability Visibility Project partnership that Alice Wong started with StoryCorps San Francisco is up and running for the next 11 months. As a media partner for this project, I’ve written blog posts in a couple different places to promote the project. It means a ton to me because we have some amazing disability oral history archives in a few places, but they’re disability places. This project will add oral history from disability perspectives to the Library of Congress, and they’ll be played on NPR. Cue the hitting of “like” buttons everywhere I can find them.

At the City of Portland ADA 24th anniversary celebration last month, I brought some microphones and recording equipment. I had flyers about the Disability Visibility Project and asked any interested folks to come do some storytelling.

The rest of this post is the transcript from a recording I did with Aimee Elber. She was at the event as a volunteer and active participant in the disability justice community. Here she is on this fine, sunny July day.

Aimee Elber[Image description: A woman with long brown hair, a black shirt, and a name tag written in Sharpie on her shirt stands outside near the trees, smiling at the camera.]

If you’d like to hear Aimee’s voice, but you’re reading this, click on the audio recording at the top of this post. You’ll hear me reading out these first bits, and then it’s all Aimee.

Aimee Elber
Portland, Oregon
July 26, 2014

My name is Aimee Elber, and I am a person living with a disability in Portland, Oregon. My story started before I was born. My mother was diagnosed with MS, multiple sclerosis. They discovered it shortly after my birth, but she had been living with the symptoms for quite some time. So I have a unique perspective as a person who grew up with a parent who had a disability.

In first grade, I went to get my hearing tested with all of the other kids in school, and they sent the rest of the group home and back to class. And they kept me back and did some more tests, and it was discovered that I have a hearing loss. And so starting from first grade, I began wearing hearing aids. So I also have that perspective as a person living with a disability since a very young age. I had challenges accessing education and being discriminated against because of my hearing loss.

When I was in my early 20s, my father had neck surgery that left him a quadriplegic, and he was paralyzed for about two years before he passed away due to complications of that surgery. So I also have another layer of perspective as a person who is a family member of someone who had sudden-onset disability, and trying to navigate not only their physical environment but legal and access issues surrounding having a disability and understanding occupational therapy and how to get from one end of the house to the other.

Right now, I work with people with disabilities at Clackamas Community College in Oregon City, Oregon, and my job there is to serve students with disabilities and help them get accommodations in the classroom. So my experience continues to support me and my goal of serving others with disabilities in the community, being an advocate and an agent of change and someone who is striving for social justice around these issues. My hearing loss is one part of my disability, but I also have the experience of living with others who have disability. And so what I bring to the table is a diverse range of experience and opportunity and understanding around these issues.

Well, this is interesting. I could probably honestly say that I have been offered employment because of my disability. With me, I see my disability as a strength in certain areas. I am somewhat proficient in American Sign Language, which is actually an asset in my field. And so when there’s that little box at the bottom of the application that says “Are you a person with a disability, are you a veteran,” you know, “are you a minority?” I’m able to check one of those boxes that I do have a disability. And it helps me to bring awareness to my colleagues about disability and access and accommodations in the workplace. So I think it’s been helpful for me. It’s gotten me places. I’ve embraced it as a part of who I am and used it to my advantage.

Having this disability, it always hasn’t been sunshine and roses, but I’ve turned it into something that can be useful in my everyday life. So I would have to say that would be one way, I think, that I have been told by employers that it was seen as an asset that I have a disability, and I can relate to the population that I’m working with.

I was diagnosed when I was very, very young. It was determined that I probably had my hearing loss for a while. My parents thought I was being defiant and not answering them, but I just couldn’t hear. And then, you know, my mother who was diagnosed in her early 20s, and then my father who had a neck surgery when he was 47 years old. So I’ve seen kind of the full spectrum closely in my family.

And I would say, while I don’t represent all disabilities or all experiences, I think that for a lot of people, I think the reason that those poignant stories stand out for people like you who maybe have a disability later in life, or an acquired disability later in life, is because it’s a stark contrast to what you were used to. Whereas, those of us who have had the disability and grown with it, it’s a part of who we are.

Someone recently asked me, they said, “Oh! You had a hearing loss, and you’ve had that all your life. Was it hard as a kid?” And I said, “Yeah. You know, there were times where I was embarrassed of my hearing aids, the large over the ear.” You know, every kid in junior high has some self-image issue going on. So that was mine. But as a adult, my hearing loss’s become a part of me just like if people were to say, “Aimee has brown hair and blue eyes.” It’s just who I am. So for those who have an acquired disability, it’s not who they are. It’s something new. It’s different. It’s a change. And it can be disabling, or it can be a part of who you are. It depends on how you learn to accept and accommodate and work with and understand all of that. And neither way is good or bad. It’s just how it works.

So I would say I think there’s value in hearing the stories of people with an acquired disability. They have a different perspective that is important for us to hear. At the same time, I think there’s value in those that’ve grown up with a disability or have had it for a long time. And I think that the answer is to meet in the middle and come together and share stories as a group together, and to open up the lines of communication for understanding and collaboration.

I think it’s important to recognize, though, that there’re certain communities that have been oppressed in the disability world. And because of that oppression, sometimes we become guarded. And I think that there is value in understanding and recognizing hey, yeah, you get it because you’ve dealt with it too.

But, you know, I will never know what it’s like to live with a traumatic brain injury, or maybe I will someday. I don’t know. [giggles] At this moment, I can’t understand what it’s like to live with traumatic brain injury, and you can’t understand what it’s like to live with a hearing loss. And so that’s, I think, the lynch pin of making this work happen, is recognizing our differences, but within that scope, recognizing our similarities and coming together on that. And seeking out the overlap and collaborating there in that space is going to be really beneficial for the disability community, I think, while respecting our differences and respecting and understanding that we are unique, and we do sometimes need to stick to our own, because there’s culture, and there’s connection.

I think if I were to leave one nugget of information with the world or the community that may be listening to this, it would be that one thing that I’ve learned throughout the years is the importance of recognizing that we are all very, very different. It’s frustrating for me when we meet a person, and we learn about a disability or a difference, and we automatically assume that someone needs a particular accommodation or may not like a certain thing or may need help with one aspect of access. I’ve found that this is not the case, that we are all very unique, and we all contribute to the tapestry of life in different ways and different forms and shapes. So if I were to say one thing to my community, it would be to please notice a person, person first. Recognize the person, ask questions, try not to put those blinders on when you hear about a person who has a disability or a difference, and remember that we all have unique experiences just like myself.

So thank you for your time.

[Recorded by Cheryl Green on July 26, 2014 during the City of Portland ADA 24th anniversary celebration held at Matt Dishman Community Center. This was part of a conversation between Aimee Elber, guest and volunteer at the event, and Cheryl Green, event planning committee member.]